Tonight Yirmi (8) was almost run over by a car.
You know how I said in October that I was going to share thoughts about Down syndrome, and then didn’t?
It’s because it’s so hard sometimes. So, so hard.
I’ve asked myself, what’s the point in writing about the difficulties, in telling you how overwhelmed and discouraged and exhausted I sometimes feel? What is the gain, who benefits? Do I need to write to get it out for myself? So you empathize with me? No. So I don’t write anything.
To add to that, I don’t want to negatively impact the perspective towards people with Down syndrome. Because there are so many societal stereotypes to overcome that are hurdles for the person with Down syndrome. So I don’t write anything.
And yet, what about my reality? To ignore all the challenges and not write about any of it seems dishonest. By not acknowledging the challenges, all my positive posts would be taken on their own without any counterbalance to accurately reflect my daily experience.
Yirmi is an awesome kid. Truly. He’s smart and kind and enjoyable to spend time with.
And he’s been an ‘eloper’ (I’m choosing the more positive term rather than ‘runner’ or ‘escaper’) since before he turned three.
This is common with kids with T21, and it was my biggest concern (other than government involvement) when I thought about fostering a baby with T21. Because I didn’t know if I could deal with it with another child. (I reassured myself that it wasn’t a sure thing that he would become a runner, and maybe without Yirmi’s tutelage, he wouldn’t have been…..).
Generally this is an issue parents face with very young children for a short time that is pretty easily managed by just keeping the door locked. But when kids get older, they become very capable of unlocking doors, climbing through windows, over gates and fences, out of cars….
I’ve spent over five years, every single day, wherever I am, monitoring Yirmi’s whereabouts. Early in the morning before I’ve even fully woken up and opened my eyes, my ears are already listening to hear if he’s awake and trying to leave the house.
When he was five, we had double sided coded locks installed on our entry door. Overnight, the stress level of every single person in the house went way down. It wasn’t perfect and there were still many instances to deal with, but it dramatically cut down on the management aspect.
And then we moved here 7.5 months ago, which has been so wonderful in so many ways. Where there are many more possible ways to get out than one, and with a child who is bright, curious, persistent and determined – all our efforts to keep him in fail. Fences, gates, locks…it takes him just a couple of minutes to figure out a way out.
So it comes down to constant surveillance, and that fails, too. Because it’s actually impossible to not take your eyes off of a child in the course of a day.
Since Yirmi turned eight this summer, I’ve realized that he isn’t generally doing something inherently dangerous, he’s not running away – he’s running toward friendship, connection and stimulation.
It’s normal for an eight year old to want to get out, to see people, to have experiences. It’s appropriate and understandable. I don’t want to turn my home into a jailed fortress (though believe me, I’ve seriously considered it many, many times). It’s been really important for me to remember that this isn’t a behavior issue but a processing issue.
What that means is the natural desire for independence isn’t tempered with an awareness of danger. Additionally, it’s as if he has no memory of anything we’ve repeatedly talked about on this topic – our constant reminders and discussions about needing to ask us before he goes somewhere – even if it was two minutes before. It literally makes no impact.
So things happen.
Tonight I brought him home from playing at the neighbors, and started to prepare the foods he requested. I turned around…and he was gone, again.
I assumed he went to play with the neighboring children in the area near our garden gate (that’s usually where he is), and a few minutes later, I asked my older son to see where he had gotten to.
Before my son left to get him, someone came to our house asking if I was his mother. She informed me that as he sped down the hill from our home on his ride-on car straight into the traffic of the main street that our street dead ends into, he had almost been hit by a car.
She described how he flew in front of a car whose driver slammed on his brakes, missing him by a hairsbreadth. She and another person who saw what happened both told me that he went between the wheels – presumably she meant he flew between the wheels of the car that stopped and the one right ahead of him – but it was clear that it was a very dramatic, very close miss.
It had been five minutes that he had been out of sight.
I went to retrieve him from the store on the other side of the street where he was waiting, not wanting to look at any of the other customers. I didn’t want to hear any comments about why can’t you watch your child, and don’t you know he almost got killed and where were you???
No one has any suggestions about how to keep track of him that I haven’t already tried. All I hear is, “You need to be more careful.”
How? How can I be more careful than I already am? He’s bright and capable – and his processing ability isn’t like a typical kid. So his impulsivity has nothing to balance it.
I know one day this isn’t going to be an issue. But right now, that feels far away and it takes a lot of emotional energy to get through the day. I try to begin my day with quiet meditative time in which I fill my mind with positive thoughts about Yirmi; this makes a huge difference as the day unfolds. When I don’t do it, by the end of a day I feel like I simply can’t live like this. Not one more day.
This ongoing, years-long challenge has been significant not just for me, but all of our family members living at home. It’s draining for everyone; it’s definitely not all unicorns and rainbows, that’s for sure. There are blessings and challenges with every child, and for me raising a child with Down syndrome has meant more of everything. I feel the blessing more and I feel the challenge more.
Avivah
Leave a Reply