‘Last night we learned of the death of a toddler his age as we watched the news. Emergency rooms aren’t filled with kids like him.’: Mom of special needs child says ‘the least I can do is keep my family out of your care’

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“Before COVID-19, a good friend who is a social worker asked me what advice I had for her as she worked with children on the spectrum in hospitals. At the time, I had some thoughts but never got them to paper.

As I sat today, during one of the tougher days with the twins, I found myself grasping for perspective, and my thoughts landed back to that conversation and how it relates to our current state. What advice would I have for anyone who needed to care for either of our boys, particularly Luca, who hasn’t found all of his words to express what he needs, should he be put in a situation where I could not be present as his advocate, caretaker, and comfort?

Although the emergency rooms are not filled with toddlers his age, we just learned of the death of one while we watched the news last night, which means it could happen. With that in mind, if this is of any help to someone whose responsibility is to care for a child like Luca, here’s the only advice I can think of that could be helpful.

If you find yourself needing to care for a boy like ours, in a situation where we could not be present, he would be in fight or flight mode… and he hasn’t let me cut his nails this week, so if it’s fight mode, he will draw blood and leave a mark, like the one he dug out on my chest today. Please be gentle if you need to protect yourself. He is little and even though he is fiercely strong, he is our baby and he’s just scared.

If he runs from you, you will not catch him, as he is fast on an average day, but could outrun a championship linebacker when he’s scared. His little body can fit in places where you won’t be able to find him, taking away your time and energy to search for him when you are needed somewhere else. Small spaces will make him feel safe and he is far too good at hide-and-seek, so please don’t let him run.

When you finally catch him, he will laugh at you when he is scared or sad, worse if he is mad… but he will break your heart when he finally cries because the anguish in his big hazel eyes will pierce through your heart. He loves compression, so if he lets you, please hold him tight. Give him a moment when he thinks you are us and when you feel his body release, please hold on for another minute longer so he knows he’s not alone.

When he finally starts to trust you, I hope you have an iPad with YouTube installed on it. Make sure it’s charged because he will use every ounce of juice it has to calm down by focusing on finding his videos.

And please, for all the love there is in this world, have some kind of box or bag of figurines or cars that he can inspect, line up, and use to take his mind off being so scared. Even five or six pieces to give him enough of a grouping to require order and sorting will be enough. Get creative if you need to.

Lastly, by no means am I trying to tell you how to do your job, as I know what we are asking as a society during this pandemic is already too much, so I hope you don’t take any offense in the extreme measures I’m asking you take with my son or children like him. My job is to make sure he doesn’t end up there in the first place, so we will continue to stay home, wash our hands religiously throughout the day, sanitize everything, and pray our children do not end up in your care.

But if for some reason my son, or a child like him, does end up in your care, please don’t worry about anything I just asked of you… because there isn’t anything that will stop a parent of a special needs child for being there when their kids need them, not even COVID-19. I won’t be going anywhere. You just keep on with the good work you are doing your job, and I’ll keep on doing mine.

In the meantime, I’ll keep remembering that this too is temporary, and all the sleepless nights he is having without school, a dependable routine of OT, speech, one-on-one attention from an aide, and scheduled dependable expectations with learning and social interaction… this too will all be a memory eventually.

If you’re strong enough to leave your families every day to protect, care for, and save families like mine, the least I can do is work to keep my family out of your care.”

Courtesy of Christina Young

This story was submitted to Love What Matters by Christina Young. You can follow their journey on Instagram and their website. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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