“It makes perfect sense and is only fair,” I laughed, the tears welling in my eyes, partly from being utterly worn out, but mostly from the deep down need to laugh. Our feisty eleven-year old tornado had blown through our morning at an S10+ rating (stubborn) and had finally departed to go upstairs and play on her own. It was in the silence of the aftermath that we stumbled on the brilliant realization; if our children have their very own growth chart to measure their physical development, then it’s only logical that we, as their parents, should have our own aging chart – one that takes into account the high level of stress these extra-chromosome carrying little loves bring into our crazy and blessed lives.

There are a lot of misconceptions out there about people with Down syndrome. I can’t tell you the number of times someone has told me they know someone with Down syndrome and “they are always happy.” I can tell you this is a gross oversimplification of these amazing beings and is simply not true. Perhaps the best example of how frustrating Mary’s world can be is the comparison of her every day learning challenges to the feeling of traveling to another country where you do not know the language, culture, or your way around. The constant struggle to process information at a rate that is faster than her brain can handle is exhausting and can often lead to any and all efforts to try and control her environment. These efforts are not always positive and are certainly not always delivered with a smile.

Dr. David Stein shed such light on our little one in his book, “Supporting Positive Behavior in Children and Teens with Down syndrome.” He explains that, for our children, “emotional responses to behavior problems can be really destructive” and says parents have to “turn off some of their gut reactions to behavior problems in order to have a chance at managing them more effectively.” Basically, any strategies we used with our two boys need to “go out the window.” I could go on forever about what I learned from this book, but the long and short of it is we have this fragile little girl who needs and deserves her environment to be consistent and calm, her days to be scheduled and routine and parents who respond to her behaviors rather than react. Essentially, “we need to do the complete opposite of what our instincts tell us.” Easy, right??

Let me give an example to put things in perspective. Mary is fairly independent in the shower these days, yet I still insist on helping to wash her hair as it’s not an easy feat – the length now running halfway down her back. It never fails that she wants “one more minute” to play in the water when I ask if she’s ready for me to do her hair. I always honor her request the first time and then brace myself when the minute has passed, certain that she will ask for another when I tell her it’s time to shampoo. I open the door with my best theatrical smile plastered on my face and promise she can have one more minute once I’m done. The second the door opens, she steps just outside my reach and turns on her fire-engine whine for “one more minute” while splashing the stream of water into my face. Every. Time.

If I raise my voice to try and be heard over her pleas, she raises hers that much more. If I attempt to reach in to pull her closer, the splashing efforts increase tenfold. Threatening any sort of discipline, like a time out, means absolutely nothing to her. Time outs aren’t really an option these days, as she is too big and strong for me to carry over to a chair and there simply is not enough duct tape in the world to get her to stay there for any amount of time. It all comes down to pure self-control and strategy on my part. It’s critical I don’t give her the satisfaction of reacting to her behavior, as any reaction, good or bad, fuels her never-ending thirst for attention. I take a deep breath, put on my smile and act as though washing her hair is going to be the funnest thing in the world while praising her for doing such a good job so far with her shower. I ignore the blare of the siren and the splashing as if they aren’t happening and give her back full control with a question I already know the answer to. Something like, “Mary, do you want to watch a movie after your shower? Yes? Or no?” She says, “yes” and I tell her what needs to happen first. “Ok, first shampoo, then movie”. All this, for the otherwise simple task of washing my child’s hair. And then getting her to turn off the water and actually step out of the shower is, well, a whole other battle for control. The twenty minutes it takes to get this girl showered feels like at least two hours of endless struggle. Hence, the need for my own personal aging chart.

I’m indebted to this Dr. Stein for helping me understand my daughter, how her brain works, how she interprets and manages her world and how my strategies needed to drastically change from reacting to responding to her behaviors. We still seem far from that ever-elusive island of peace, yet we are definitely in the boat, traveling in the right direction.

All in all, the “respond but don’t react” method is entirely applicable to much more than a child with an iron will. I wonder what better shape this world might be in if we all adopted this strategy. Responding to our neighbor, family, friend or stranger for that matter, takes a lot more thought and effort and opens up an appreciation and respect for one another that seems increasingly rare these days. Dr. Stein said it best when he spoke of emotional responses to behaviors being “really destructive” for children with Down syndrome. It seems to me this is probably something we can all relate to, extra chromosome or not. I think about one of my favorite bible passages about Jesus meeting the woman at the well and how that might have gone very differently if He had reacted to her lifestyle rather than responded. If I’ve learned anything about myself as a parent, it’s that my reactions are always fueled by emotion and fear, while a response comes with understanding and perspective. My response to Mary takes into account her learning challenges and her need to have some sort of control over her world.

I fail often because I react a lot. I’m working hard on it, but realize I need my faith to be the current if my boat is ever going to make it to that island of peace. Thankfully, my husband and I are good at laughing and find more humor in our gray hairs than tragedy. When Mary was a baby and we were getting our first hint of the strength of this girl’s will, we would often comment to one another about parents we knew who had older children with Down syndrome and how they looked so much older than they really were (the parents, that is, not the child). We often now wonder if we look as worn as we feel. 

I’d submit we all would age more gracefully if we could hand over the rudder and give up our need for control. Each and every morning (most starting at 5am, but some as early as 3 or 4 – did I mention she doesn’t need much sleep?) I need to meet my little lady in that foreign country just as Jesus met the woman at the well. It’s up to me to respond with love and understanding and help her learn the language, understand the culture and find her way around. And in my moments where I need to find my own way, I’ll continue to depend on the one who faithfully responds to me with mercy and love. Every. Time.