I have seen the question posted on internet discussions sites as well as the blank stares of people passing us in the mall. Everyone is wondering, “What is it like to raise a child with Down syndrome?” From my perspective the extra-chromosome doesn’t make a lot of difference. However, the true answer is going to depend on your experience level with parenting in general.
Really, he’s just another one of my kids.
A matter of experience.
If you are reading this post because you just found out the child you are expecting or your newborn child has Down syndrome I want to be clear in the fact that things are going to be okay, no, better than okay. You have been or soon will be blessed with a little baby, enjoy that gift from God.
I have 16 years of experience as a parent but only four of those have involved being a parent to a son with Down syndrome. The fact that I had 12 years of experience as a parent before Trisomy 21 became a regular part of my vocabulary is an important fact. Kids fundamentally change the marriage equation, not just kids with disabilities but all kids. I was stressed when my first baby came along; there is a big learning curve with the first child and that does not change with Down syndrome. However, a first-time parent may attribute that learning curve to the extra-chromosome when they shouldn’t.
What makes a need special?
I can remember waiting in my wife’s hospital room for the nurse to return from the nursery with our second daughter, Taylor. When the door opened and the clear plexiglass bassinette rolled into view I noticed that its sides were coated with a layer of spit-up. Upon questioning the nurse explained that Taylor had a little issue keeping her food down. Or, if you want to put a positive spin on it, Taylor had a talent for projecting her food across the room.
As a result of Taylor’s sharing nature, we had to adjust to her unique/special needs. We ended up having to add cereal to her formula in order for her to be able to keep from spitting it up. I say that like it was a simple fix but that was the final conclusion after many failed attempts to resolve the issue as well as several visits to the doctor.
The addition of cereal to her formula made it difficult for the mixture to flow through the bottle’s nipple so I had to modify them. I can remember trying to use pins to create several small holes that I hoped would become a larger hole. I then tried heating up the pin with a lighter and trying to melt the nipple in order to increase the size of the hole. I even tried cutting it with a knife. Needless to say, once we found one or two that worked for Taylor we protected them like they were gold.
I have four kids – 3 girls and a boy (Treyton has a little something more). All of my kids are different but alike. First, all of my kids have different likes and dislikes that I need to adapt to. All four of them also have slightly different ways in which they learn. Activity levels differ, one child suffers more from allergies than the others and another child seems to get sick more easily. One or two of my children need a little extra correction than the other two. Also, I need to customize how I administer that correction to each child, what works for one child does not necessarily work for another.
My point is that every child has unique/special needs. The trick is that there is a line in the sand where these needs are no longer considered lowercase “special” and become uppercase “SPECIAL NEEDS.” If you want to make a big deal about raising a child with SPECIAL NEEDS you can or you can look at it like I do that you adapt to the unique requirements of each child and having a child with a disability is not really that different.
You do the same things but the reason may differ a little.
For just a second let’s pretend that Down syndrome did not exist. I don’t think I would like that reality but for the sake of discussion we need to pretend that is how it is. What do you do when your child is sick? You bring him to the doctor. What do you do when your child is having trouble in school? You get her some tutoring or other form of extra help. What do you do if your child is bored and needs to stay active? There are a lot of options here but maybe you build a swing set. What if your child is lonely? You invite other kids over or join some type of play-group. We did all of these things for our three girls as well as Treyton, you know, the one with Down syndrome.
The swing set expansion.
When Lindyn, my 3rd daughter, was younger my neighbor’s kids were finished with their wooden swing set so he said I could have it and helped me move it into my yard. This was quite an upgrade for us. It had two swings, a two-person glider, and a little fort with a slide coming out of it. This was great for her and when Treyton was old enough he was drawn to it also. Well, I have construction in my blood and was itching for a project that allowed me to build something. I decided it was time for a swing set expansion.
Before I go any further I need to admit that I could have written this post without talking about the swing set. I could have used other examples such as reading books, or taking a bath, or maybe making dinner to illustrate the point. But I am pretty proud of my, I mean the kids, swing set that I expanded.
Before starting I consulted Lindyn, my in-house expert, for some ideas but mainly relied on images I found on the internet as well as what I saw in other people’s backyards. The only requirement I was given was that Lindyn needed some monkey-bars, they are her favorite. With the exception of the monkey bars, I really didn’t have a plan when I started. The design revealed itself as I went along. Here is a link to the monkey bar plan I used.
Building or expanding a swing set is a common thing for parents to do; it’s not a “Down syndrome” thing. However, as I consider the features I wanted to add I was thinking about how they would help Treyton because he has Down syndrome. The features are things all kids enjoy but the reason I chose them was a little different. Here are some examples as well as cute pictures of the legend we call TREYTON.
Builds both upper and lower body strength, helps with balance, as well as coordination of arms and legs.
Builds hand/grip strength as well has some core strength. It also helps with adjusting to movement.
Encourages imaginative play. There is also a telescope in the window of the fort below.
Provides practice with a basic skill as well as helps him to get a feel for his surroundings and how to use his body (legs and feet) when he cannot see them.
This helps with balance as well as coordination. I designed this beam with varied heights and directions with the hope that it will keep his interest longer.
Treyton will hang from the bars but you need to be there to catch him when he drops. Someday I am sure he will love them just as much as his sister Lindyn does.
The same activities with a little more focus.
I expanded my swing set and focused on some features that I believed would benefit Treyton’s physical development, there is a pretty good chance I would have expanded it even if Trey did not have Down syndrome. There are a lot of things like that but maybe a little more mundane.
Take reading as an example. We read to all of our kids as I am sure most parents do. But with Treyton there are some things that we focus on and are more intentional about. We use that time to work on colors and counting, to talk about prepositional phrases, and other things like that.
We do take Treyton to speech therapy which is not something we did with our other kids and I believe it is a challenge connected to Down syndrome. However, I know of several people who take their children to the same place for therapy and their kids don’t have Down syndrome. As parents you do what it takes to help your kids.
Labels seem pointless.
To sum it all up I say that my “official” answer to the question about what it’s like to raise a child with Down syndrome is that it is really not that different. I don’t personally see a lot of value in labeling things, this action is from Down syndrome or that action is not from Down syndrome. I tend to be fairly pragmatic. As a father I have to deal with the action no matter what so I don’t waste a lot of effort with labels. We are parents need to embrace the individuality of our kids and if Down syndrome is part of the equation then so be it. Kids are kids.