So what’s it like to parent a child with Down syndrome? How long do you have to read this article? Because I could probably fill a book with the myriad of answers to this question. So for the sake of blog etiquette, I’ll keep it as succinct as possible.
My personal experience only goes so far. Our son, Kirill, was adopted from a Russian institution at the age of five and he’s been home with us for 2.5 years. So a lot of our experience has been influenced by the neglect and trauma of living in an orphanage for the first five years of his life. Our experience is vastly different from many of our friends who have biological children with DS, or who have parented their adopted children with DS from birth or soon after.
First, let’s talk about the medical stuff because people are always concerned about that. Kirill doesn’t currently have any additional health complications that sometimes accompany DS. However, we had to do a lot of testing to rule out any of these common issues AND we had to do a lot of interventions and therapies (still do) to help him learn to do many age-appropriate skills. Medically, we had special X-rays of his spine in case there was any sign of instability, extensive heart testing to make sure there were no issues there, and a swallow study. At first, Kirill couldn’t swallow normally and we had to thicken all of his foods and liquids to make sure he didn’t aspirate on them. We worked with a speech therapist and an occupational therapist on swallowing skills for a few months and these issues quickly resolved for him.
Kirill also had a lot of issues with his eyes and we had to go to a specialist who works with children with his specific condition (strabismus). He also had really bad ear infections and gastrointestinal infections. It took us a little while to sort all of that out too. He has tubes in his ears and he had to be on a special diet/take lots of antibiotics to get his guts regulated and clear of infection. He still needs checkups every six months on both his eyes and his ears.
At first, getting all of Kirill’s doctor’s appointments and therapies set up was hard. We had four therapy appointments on a weekly basis. I kept charts and meticulously wrote down every single thing he did. I did choose to let my professional goals slow down, with the knowledge that both the doctor’s visits and therapy sessions would likely decrease as Kirill grew older, and I could always work later. (Other parents don’t have the same flexibility as I did, which doesn’t mean they are forced to choose between working and caring for their child. The therapists go to the day care in that situation.)
As far as just the hardest thing we deal with on a day-to-day basis, potty-training has been our greatest parenting challenge. Due to low muscle tone and hyposensitivity (difficulty feeling sensation), we are still working on potty training (Kirill is 7. Average age for children with DS to be fully potty trained is 8…so we are right there with the average). Another difficulty we have with Kirill is socially appropriate behavior. He pushes, eats off other people’s plates, and doesn’t sit still very well (also sounds like a typical child at time…ha). Both of these are to be expected and are not impossible to learn for children with DS, just a little harder to teach/learn.
Kirill also doesn’t speak so that presents a lot of extra challenges. I’ve read percentages of children with DS that never learn to talk at all…it’s not that high…most children with DS do learn to talk at some level. Honestly, I don’t even care anymore if Kirill talks or not. Sometimes, his non-verbalness (is that a word?) even comes in handy. I never have to worry about him talking incessantly on long car trips. He doesn’t talk back. I get lots of “quiet time” if I just have Kirill around. We have another son who doesn’t have special needs. He is on the opposite end of the spectrum…hyperverbal even. So it’s kind of a nice balance. Many parents of adult children with Down syndrome that I’ve talked with often comment upon the fact that their son or daughter with Downs is the “easiest” of the bunch. Although the individual stories will vary, the overall portrait of family life with a person with DS positive. Is it harder in some ways? Sure. But our family motto has become “easier is not better”.
When other people describe children with DS, they often say things like, “They’re so happy all the time!” or “They just go with the flow and are easy to please.” Well, I’m here to tell you that is a myth. Sorry to disappoint, but Kirill has the full range of emotions that any other human being has and then some. He’s really good at letting us know when he’s upset. I think that myth may be perpetuated by something that I DO see in Kirill. He is easy to get over things. He doesn’t really hold a grudge. His frustrations are the same as our other son, but I do think he “gets over it” faster than Clayton. However, that isn’t true of every child with DS.
Which leads me to the main thing I want you to know about parenting a child with DS. It’s very much like parenting any other child. My joy and heart come from seeing Kirill succeed, watching him grow and learn, and looking forward to his future. Maybe my tune will change as he gets older and we face new challenges, but I don’t really think so. God has always given us what we need when we need it. We just take it one day at a time around here. Kirill has taught us to slow down and not worry so much about tomorrow. It’s actually a pretty awesome to be able to realize that in a world where people get so caught up in the rat race.
A lot of people ask, “Will he ever (insert skill here…talk, potty, etc). Well, we don’t know. What we do know is that Kirill is limited. He’s more needy than other children his age. He’s vulnerable because of his special needs. But so am I. So are you. We are all limited, vulnerable, and needy.
I guess that’s where Jesus becomes the common denominator for us all. We all need help…and my help comes from him and the people he uses in my life. We all need community and family and other people with whom to be interconnected. We all need help from Jesus and each other to do life.
So maybe life is harder with a child with DS. Maybe it’s just different. All I know is, I wouldn’t have it any other way.
By Tesney Davis, Parent to Kirill from Russia