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
Oh Aviva! I am sorry you had such a scary experience today. I’m reminded of the saying that although none of us are in control of our lives, only some of us live with the visceral awareness that we’re not in control! I’m grateful you shared this particular challenge, as I think it’s important for all parents to know that even terrific moms struggle, and that sometimes we’re faced with situations we can’t solve. We manage the best we can, are open to new ideas as they arrive, but ultimately, accept that the solution lies in the hands of Hashem. I hope you have a calming, restful night, and an easier day tomorrow.
Oh, my goodness, I definitely get the opportunity to live with the constant awareness that I’m not in control! 🙂 And while this isn’t the main message that I think I need to learn – giving up control has been a major focus in my work in parenting
Everyone has struggles and it’s important for me to share because I see many of us moms tend to go into self-shaming when things feel hard, thinking we should be doing something differently or better and we’re somehow at fault for things being hard. But that’s just not so. As you said, sometimes there’s no solution that we can come up with, and that leaves us needing to remind ourselves that all we can do is our best, and that has to be enough.
Oh my goodness! Avivah, I had no idea this was even a thing! Thank you for sharing this. You are absolutely right that when one only shares the positive we on the outside see only that side. Wishing you lots of strength! Keep being the absolutely amazing mother you clearly are!!!
Thank you, Shoshana! We usually can’t see that the challenges that every one of us is facing. And while caretaker burnout is a real phenomenon that I’m experiencing, all challenges have the potential to bring us to a better place. So that’s my intention, is to grow and use this to help create a better life for all of us.
How do you know this won’t last for his entire life? I don’t have a T21 child but I have one who is so impulsive and sensory-seeking and seems to constantly be getting into dangerous situations. And she is teaching her naturally-careful younger sister to do the same. :'(
Well, Chaya, I can’t let myself think this will be forever because that’s not a helpful thought to me. I really do believe that with maturity – however long that takes – we’re going to come out on the other side of this. I don’t see parents of adult children with T21 writing about them disappearing, but it’s very common in the earlier years. It seems by around 12 many kids are more reliable, and I’m very much hoping we can cut the curve and it will happen for us before then!
I very much am familiar with the challenge of a child who teaches his younger sibling undesirable behaviors (and he teaches lots of good things, too); it’s not easy. Sending big hugs to you!
You’re spot on. It will not last forever. Our own little one with T21 was an avid escape artist, and boy did she keep us on our toes. She’s 17 now and it’s been many years since this has been a concern of ours. I think she stopped bolting at just around Yirmi’s age. Hang on tight just a little bit longer!
Thanks for sharing your experience, Miriam, it’s very encouraging!
Sending you hugs and a thank you for all your encouragement for all of us moms in the trenches, with whatever our particular challenges happen to be, especially the ones that last for years and don’t have an obvious solution. Hope things get better and easier for all of you soon!
Thank you, Regina! I’m positive it’s only going to get better and easier, hopefully sooner rather than later! And part of it getting better is acknowledging to myself how extremely difficult it is, and not feeling like I have to be the solution. I really believe that the first step to resolving a situation is to get clarity on what your needs are. And all of this challenge serves to sharpen my awareness of what I need.
I am sending you tons of hugs!!!
❤️❤️❤️❤️❤️❤️😘
Thank you so much!
Avivah, I rarely post, but I wanted to know that I understand. You are not alone. I, too, have a runner, or as you so kindly label it, an “eloper.” I’ve been on high alert since he started walking, and he turns 14 in a few short weeks. I appreciate your bravery in sharing your struggles. I believe it is a powerful encouragement to simply know that we don’t live these struggles alone. I love being a mom to my son, I’m so very grateful for that blessing, but it hasn’t been easy. Your story is powerful in a positive way. It’s better to share the hard things than avoid them.
Thank you for your validation, Tracy. It helps so much hearing from someone who understands how hard this can be, and understands that as much as we love our kids, it can still be a real challenge.
I was thinking about your post for a long time after I read it, as I had no idea you had this particular challenge with Yirmi and I was imagining how very stressful and draining it must be. While you know it will pass eventually, until it does it constantly weighs on you. May Hashem continue to keep Yirmi safe and to help all of us weather our myriad challenges by remembering that we are always in His hands.
I’m a regular reader who never comments. For this I came out of the woodwork.
First of all, I think it’s extremely important for you to write about the hard/draining/challenging side of life/kids with T21/homeschooling/Corona etc.
That’s because it helps the rest of us both have more reasonable expectations, as well as be more able to learn from you.
Reasonable Expectations:
If you only wrote about the positive and the good, omitting the fact that some days/elements leave you seriously drained, when we feel seriously drained we think that there’s something wrong with us. “If only I was more positive/had a better attitude/more bitachon, etc. I wouldn’t feel like this.” “If only I was more like her (i.e. you) I wouldn’t feel like this.” “There’s something wrong with me, lacking in me, if it’s so hard for me.” Essentially, “If it’s this hard, I am bad.” And then the person has to deal not just with the primary difficulty, but with the guilt and self doubt that comes along with it, the niggling feeling that somehow it’s their fault.
Being Able to Learn from You:
You really are an amazing person, an amazing mother, and you’ll always come up fighting for the wellbeing of your kids and yourself. You don’t let yourself stay in the dark place of “this is too much, I can’t.” You leave no stone unturned in the quest to make things better, even if you can’t make things perfect. We don’t have to reinvent the wheel. We can adopt your techniques (at least those of them that work for us). But we won’t be able to use any of your tools (like the meditation, to set you up for dealing with a challenging kid all day long) if you don’t share them with us, and if we don’t understand that these aren’t just “cutesy feel-good” ideas that you’re sharing, but the stuff that you actually use to retain your sanity and be the amazing powerhouse that you are.
In a word – be a realistic, relatable role model. You’re still amazing, even if you don’t have everything totally figured out.
Nuff said.
Now on to the last point.
Your kid almost got run over. Almost died. That’s major. Give yourself the time and emotional space to let yourself feel that and process that.
Was it your fault? No.
You are doing everything possible to keep this kid from escaping (and I know how fast a kid can zip away, downhill, on a getaway-bimba). You did your hishtadlus. It happened in a split-second. Something happened that was beyond your ability to predict or control. It wasn’t your fault, and it wasn’t your job to save him, either. Hashem made it happen, and Hashem saved him.
I have faith in you that you’ll continue to do your utmost to figure out every single way (and combination of ways) to keep him safe. Maybe you’ll come up with some new ideas for the future. But that doesn’t mean that you were negligent in the past. We work in the present to plan for the future. What happened in the past is min hashamayim (assuming that we were trying to do right, with the knowledge and information that we had at the time. Which you certainly were.)
I wonder if you can set up a buddy system, with different family members taking shifts throughout the day to keep an eye on him. I wonder if they make some type of tracking device that would alert you in some way if he went beyond a certain radius (not sure if you’d approve of such a thing, even if it does exist). It sounds to me like you seriously need a break. There’s no way you can stay on that level of high alert permanently. Something will happen. Maybe adrenal fatigue. I don’t know what to call it. Maybe you can even pay someone to keep an eye on him for a few hour a day, so you can go “off duty” (didn’t you mention something like this a while back?) Maybe some of the marrieds can host him for a day or two, to give you a break. There’s got to be a way to outsource some of this.
P.S. I have a gut feeling that some of what you’re dealing with is the challenge of moving to a new, very different place. It has different characteristics, and different characters. You had it more figured out in RBS – where you were living for longer, in a much more Anglo community. I hope that once you settle in and get the “lay of the land,” you’ll learn better how to make it work for you. It’s also possible that once such a small community gets to know you better, you’ll have a village to help you raise your child. This will not come easily or instantly, but you seem to have a gift for building bridges with diverse and difficult people. This takes a lot of energy though, and you have to be in a place that you’re able to do it. But I have a feeling that it might come with time (and your hard work, of course).
Wishing you all the best. You truly are an inspiration. Especially when you show us your human side, not just your super-woman side.
P.P.S. I’ve allowed myself to be “real” and blunt, and I hope that I haven’t offended, or dumped more on your (already very full) to do list. Words do not always convey exactly what the writer intended.
Shira, I very much hope you will see this! I didn’t see your message waiting for approval until today….
I appreciate everything you wrote, and I got a little teary eyed reading it all. Thank you so much for coming out of the woodwork and taking the time to share your thoughts.
“And then the person has to deal not just with the primary difficulty, but with the guilt and self doubt that comes along with it, the niggling feeling that somehow it’s their fault.” I suppose you’ve read my post about how and why things have gotten better, and addressed exactly this. That often what makes things so hard is all the extra expectation and guilt we put on top of ourselves for not dealing with a situation better than we are.
“Maybe you can even pay someone to keep an eye on him for a few hour a day, so you can go “off duty” (didn’t you mention something like this a while back?) ” Yes, I had someone coming five days a week for a couple of months, which was great.Then she needed to leave, but later that month I found the school for Yirmi and thought that his attendance was imminent (as in, he would be there within a few days). So I kept putting off setting something up, because I didn’t think I would be needing it. For the last three and a half months, I’ve continually been told it’s just about to happen, and I keep believing it!
I started paying my eleven year old son to watch him, and also started allowing myself to feel okay about using educational videos as an assist. We have new neighbors who enjoy having him over, my daughter moved here recently so now we go visit them or they come here, and that’s all been really helpful.
Can you ask local groups about the availability of door and window alarms? They’re one of the things we always try to provide before court involvement but they aren’t things people generally know about. I know one foster mom was testing sneakers with trackers in them that could be pinged.
I know this isnt a recent post but I’m just catching up now. Have you thought about getting him a GPS tracker watch?