What's Great and Not so Great About Raising a Child with Down Syndrome

Before Mikaden sneaked into my life, I knew of people with Down Syndrome, but I didn’t really know them. I had no idea what I was in for. All I knew was that I loved him fiercely and would do everything I knew how to do to help him achieve his highest potential. We’ve learned together since day one. I’m learning all about an angel in a Down Syndrome body, and he is learning everything he can about everything offered to him.

The first great thing about having a child with Down Syndrome is that he is very loving. Everyone loves Mikaden, and Mikaden loves everyone. He is always so happy to see you and will greet you with a big “Hi!” and a smile and a laugh and a hug making you feel like the most important person in the world.
He is also, very tender. When he is sad or hurt he can make the crustiest person feel sorry for him, because he feels his pain and sorrow so genuinely and seeks comfort for it. This has helped my children learn to feel empathy and sympathy. Through Mikaden they have learned to comfort, care for and protect another person. How many teenaged boys get to fill their love buckets every day with hugs and snuggles and kisses of a completely innocent nature?

Now, before you start thinking that having a child with Down Syndrome is sublime, let me tell you of the not-so-great aspects. First, there is the nose assault that occurs every time Mikaden passes his waste. Everyone who’s been here during a number two diaper change can attest to that fact. We are desperately working on potty training. I had started trying to train him at age five, but he was not in the least interested. We gave it up for a while, then tried again at five and a half with only a little more success. As we approached age six, I tried more fervently and recruited the efforts of everyone else in the family. (I knew I would never be able to do it alone.) For quite a while, we saw a limited amount of success. However, I noticed that he had a preference for wearing a pull up rather than his underwear. I finally resigned myself to the fact that I was being paranoid, and he was being lazy. We needed to ditch the pull-ups entirely in order to make Mikaden see that we were serious about his need to use the toilet. So, with trepidation, I allowed us to run out of pull-ups and did not replenish the supply. We are on our third week of no pull-ups (except for a couple I had stashed in the car and used when we went to church). I’m a chicken, I know.

Well, I’m happy to report that we are doing better. He actually does great at night—hasn’t wet the bed even once. But during the day, well, he’s got better things to do. We usually have to force him to go sit on the toilet. Then there is the whole routine of flushing, washing, and getting re-dressed. If he’s in an uncooperative mood, it’s an energy sapping chore. Everyone helps in the effort, but the brunt of it falls on me—naturally. We have yet to accomplish putting a number two directly into the toilet. Mikaden seems to think he should first deposit it into his underpants, then get mom to put it in the toilet. Ah, well.
On the upside, if you can believe it, each and every one of my at-home boys (and even Anali) has taken many turns at changing his unpleasantness. I think my sons will make good fathers one day.
Item number two on the not-so-great list is that we have to keep track of him more than if he were a normal child. He is the reason we had to put a fence across the back of our property to keep him from going to the creek. He is the reason we now have a gate at the end of our driveway. I don’t even know how many times we have had someone, usually a sheriff, come to the door and ask if we were missing a little boy who had been found out on the road. Even as recently as a couple months ago, he made a break for the road. It was morning and the gate was left open so that Mikaden’s preschool bus could come in to pick him up. I was on the computer and Mikaden was watching a movie. I heard the front door open and went to investigate. Mikaden was booking it down the driveway. I ran full out and was beginning to fear I wouldn’t catch him before he reached the road, when his bus appeared and pulled into the driveway, effectively blocking Mikaden’s exit. Thank goodness, because I’m not in as good shape as I used to be, and I about thought I would have a heart attack.

Any time Mikaden disappears, we all go searching. There is just too much likelihood that he will get into mischief or danger. He sometimes gets creative ideas into his head, like flushing things down the toilet that don’t want to go down all the way, or opening his drawer and throwing every piece of clothing out onto the floor, or climbing up on the laundry room table and throwing all the folded items down on the floor or going out to the shop, climbing onto a chest of drawers, and then to some parts of portable decks sranding on end there and then to a very high shelf. Luckily on that last one, he knows enough about falling that he did not attempt to climb back down. I discovered him and had to do some precarious climbing myself in order to make the rescue.
Most of the time, Mikaden is actually pretty easy to have around, so long as he doesn’t get one of his incomprehensible (to me, anyway) ideas. And he definitely has a mind of his own. Our cleverness is always being challenged as we seek ways to extract cooperation from him. It’s pretty simple if he thinks that doing what you want is fun. He also cooperates better if you have a happy face than if you are frowning at him. I guess that makes us all a more cheerful bunch. Still, there are times when he simply refuses to get dressed or whatever, and it wears me out forcing him to.
Another difficulty we face is his pronunciation challenges. He understands a lot, but it’s often very difficult for us to understand him. He can make most of the sounds if they are isolated, but putting them into a word is more difficult, and then putting multiple words into a sentence…

Of course he knows what he’s saying as he rattles off some request or explanation of his problem, but I often resort to a guessing game, or in the event that fails, I tell him, “Show me”.

I do wish I could understand all of his prayer. He says it so fast, and then he laughs in the middle of it. It makes me wonder what’s so funny. One time Kim thought it was over and said “Amen” too soon. We all looked up and there was Mikaden looking stunned that his father would interrupt before it was the end. We let him finish.
One benefit of the speech issues is that we have all learned some sign language. It is fun and can be helpful. Having more than one way to communicate is a really smart idea.

A few months ago, Mikaden came in the early morning and climbed into my bed. Not wanting to disturb the wonderful sleepy quiet, I signed ‘good morning’ to him. Then, because I was curious as to just how much he could understand, I signed without speaking, ‘Can you sign good morning?’ and he signed ‘good morning’ back to me. That was pretty cool.

Back to what’s great. Mikaden is a very funny fellow. He can be quite entertaining. In fact, when he has an audience, he can be a little show-off.
I recently went through our home videos and compiled Mikaden’s most entertaining moments and burned a disc for him. Now, he loves to get his movie out and watch himself and sing along with the songs he’s performing and dance with the ones where he’s dancing. It is so cute to see him singing with himself. We have a video of him at age five doing Karaoke to the Numa Numa song. He made up his own choreography on the spot, and it is very funny.

Another great thing is that Mikaden can sleep almost anywhere. When he is tired, all he needs is a few moments of holding still and he will fall asleep. He doesn’t fight it, and he doesn’t need anything special—not even a bed. It’s pretty nice, and sometimes it’s humorous, because he is so flexible (as all Down Syndrome people are) that he can sleep in any position—like a rag doll.

And the last great thing that I want to talk about is that Mikaden LOVES to learn. He is like a little sponge soaking up knowledge. It might take him longer to get something, but get it he does. When Mikaden was one and a half, Grandma Starley gave him a toy for Christmas that had the alphabet, the numbers, and some shapes on it. Each was a button that when pushed would teach him the name of the letter, number, etc. He played with that toy for a year. We thought he just liked to push the buttons in order to make something happen. But on Christmas Eve, at age two and a half, he got it! The toy asked him to find a letter, and he found it! From that day on, we could see that he was just soaking it all in, soaking it all in. At his own pace, he can learn. He soon knew the entire alphabet, all the numbers and the shapes. He has progressed in his learning mostly by teaching himself. He chooses and watches educational DVDs, plays with educational toys, and observes those around him. He started reading words at age five. I figure he probably knows quite a bit of French, Spanish and whatever other language is on his videos. I am often astonished at his abilities. And although there are some concepts and abstract reasoning that he doesn’t grasp, I envision him becoming a very capable adult—in his own time frame.
All in all, I’ll say that raising Mikaden is a challenging, growing and rewarding experience.