“In My Defense, I was Left Unsupervised”
~Lee St. John
As I write this blog about supervision, I am about to cry — or maybe even scream. We have a personal care assistant (PCA) here to watch Ian, yet that does not stop him from wandering around aimlessly, standing next to me while I write, picking his nose and arguing with the PCA. Of course I am privy to their banter back and forth, which drives me nuts. It’s fitting, I suppose, as I write about this topic of supervision.
Having a kiddo with Down syndrome means we are on high-alert every moment. It is exhausting! This is why I dread long breaks with Ian at home. I feel a little guilty saying that as his mother, but it’s real. Every second, of every day, I am consumed with Ian.
When we decide to embark on parenthood, we accept certain responsibilities that will be required of us. We play with our children, supervise their activities, and enlist babysitters to give us a break. None of us are truly prepared to be parents, but typically these roles fade away each year, as our children become more independent. I had no idea how much longer each phase would be with Ian. Ignorance is bliss I guess, until it’s not. I still need to do all of these things, but ultimately, I want to be done with these activities. Sometimes I have a difficult time accepting that this is our life. I want him to go to friends’ houses, to hang out on his own, to have a full conversation, or to just make his own damn lunch.
“Having a child with Down syndrome is like taking the scenic route. You still get where you are going. It may take a little longer, but it will be well worth the trip”
The author is unknown, but the message is certainly clear for parents of children with Down syndrome or any disability for that matter. I agree, it IS worth the trip, but some days, I would like to get to my destination a little faster.
By far, the supervision of Ian is the most challenging and pervasive in our lives. It affects everything we do all day. Ian always needs to be accounted for, before we do anything – even use the bathroom. I catch myself walking around the house with my shoulders up to my ears – wondering what is next. Will he get into something he shouldn’t, wake Grace up too early, or interrupt Chad’s work call? Somedays I am so excited when he is eating lunch, and I know I have a mere 30 minutes to be productive. Then I debate what I should accomplish, how long it will take, and if that is the best use of my time. Ugh! Sure, we can leave him alone for 15-20 minutes, but many times, mischief such as cat harassment will occur for no apparent reason.
Recently, Ian was trying on clothes after his growth spurt. I was impressed that he was actually cooperative, as usually this type of non-preferred activity would require some sort of bribery. Alas, it lasted for just a moment. In the back of the closet was a whole stash of his shirts. At first, I assumed they fell off the hangers but no; he carefully hid the evidence. A batch of T-shirts laden with cat fur had been shoved in the back. In other words, he was left unsupervised, and he obviously had been pestering one of our three cats. He clearly knows this is wrong, because he’s hiding the clothes. It is a reminder that we need to have eyes on him all the time. I let out a deep sigh, knowing that now I need to teach him lint rolling 101, and be even more vigilant when it comes to the cats.
More stress and emotions definitely surface during breaks when Ian is home for an extended period of time. He truly thrives in the social, active school environment, so it’s difficult for us to provide that for him, and it’s challenging for Ian. Each year I ask for a list of all the teachers and aides who work with Ian so we can give them small gifts. I am astounded by the sheer amount of individuals–15 staff–it takes to navigate Ian through his academic day. Each of these people who spend a short time with Ian are able to come in with a fresh perspective. It is their sole job and focus. Chad, Grace, and I have a million other things to do. No wonder we are tired. Somedays I think we need that same kind of team here at our house, in addition to the PCAs who practically live in our home.
Like all parents, we pay babysitters to help us while we work, or need a break. The difference with Ian is that, unfortunately, the need for supervision has no end in sight. He’s currently 14, and it could still be years before he can be safely left alone. That thought simply blows my mind, and sometimes it is suffocating. Since Ian was about three, we began to search for, hire, and train PCAs. Their role is to supervise, play and provide personal care – such as help with toileting or personal hygiene. They first read the lengthy manual I have created about Ian, and then embark on Ian Boot Camp. We have met some amazing people who we still keep in touch -years after they leave us. I would not trade that for the world, but it doesn’t diminish the amount of work needed to train each person and sometimes the inconvenience of always having somebody additional in the house. So, sometimes video games become the babysitter. Yep, I’m feeling guilty about that, too.
Often – despite the fact that I know better – I allow Ian to use my phone to capture some highly desired Pokemon, so I can just have 10 minutes of peace while waiting at the doctors office. Of course he cannot just play the game and hand me my device back. No way! That’s not his version of fun. I assume he is still battling with a new found Pokemon, but instead he is finding one of my apps to delete, thinking I will not notice. Phone in hand, I look down and sure enough there is a space where an app once lived. Which one was it; my brain churns. Usually it takes me a few days to recall, and then suddenly there is an issue with Ian not listening, and I need to shut down his video game. It is then I realize – ironically, that the stinker keeps deleting my Nintendo Switch Parental Control* app. Just when I think I am onto him, he is actually onto me.
I could write much more on the topic of supervision, but it is suspiciously quiet in the house.
Resources…that may help you outwit your kiddos- ha!
Kidslox – An app that grants control and access to any iPad from a phone or other device.
*Nintendo Parental Controls – Great for setting time limits.
Smart Plug Use this for your kid’s video game unit for easy shut down.
I would love to hear your stories. Comment below or email me if you would like to be private: email@example.com
As always I feel you sister! Thanks for keeping it real.