These are the tough, but real, conversations behind the brave face of parenting teens with special needs: Caregiving. Baby-sitting. Parenting.
I've been thinking a lot about what words can best describe my role when it comes to my twins. What do you call this stage? My boys are now 15, and because of the challenges they face associated with having autism, they still require the same assistance and hyper-vigilant monitoring that a toddler would. What do we call this?
Maybe you're a parent, or even a pet owner, who knows what it's like to not have a minute to yourself. When even going to the bathroom means you can't do it in privacy; when you can't put in a load of laundry for fear that someone will break something or stick a finger in an electric socket in your absence. When you can't cut the grass in the backyard because someone could run out the front door.
Or maybe you have multiple kids and remember those years when you couldn't run errands like grocery shopping because you couldn't safely venture into a store with kids taking off in opposite directions — you would have to wait until after they'd gone to bed and trade off with your partner so they could watch the kids while you made an 11 p.m. shopping trip to Walmart.
You can't remember the last time you said yes to an invitation for a social outing because childcare was too expensive, and you haven't been invited to anyone's house in years because no one (including you) wants to work on all the dozens of necessary accommodations you'll have to build-in to make sure the visit will be a success if you bring the kids.
I'm now in my 15th year of sleeping with one ear open, with an average of four hours of sleep a night.
It's one thing when the kids were younger, to feel that your world is small and only about them. Because that is your job as a parent. That's what you knew you were in for. Sacrifices have to be made, and their needs come first. But the ugly truth of caring for kids with special needs as they age is that it starts to feel like a job or a burden. Loving them and parenting them does not. But the constant 24/7 "at-attention" caregiving does.
I'm now in my 15th year of sleeping with one ear open, with an average of four hours of sleep a night. For 15 years I have changed diapers or wiped butts (more, if you include the years with my elder son). I'm still packing lunches with only five minutes to spare before the bus arrives, pulling on their socks and brushing their teeth. I can't have a shower when the kids are awake for fear they will run away while I do, and then I worry about showering when they are sleeping in case I wake them up.
I still have to pay an hourly rate (almost equal to what I make) to have another teen watch my kids when they come after school because I still have hours to work before I can come home. My friends are now able to leave their kids home alone on a PA day; they can go out for a drink after work and might even find dinner on the table that their teen put in the oven. Some can even go to a cottage for the weekend and leave their kids home alone as long as they check in.
I literally have only two to three hours a week that I can count on, when I know my kids are at an activity where I don't have to be with them or I'm not at work. I have a couple of hours to myself a week. That's it. Any other respite I get will cost money I don't have, and any money I get for the specific purpose of respite is used for the necessary after-school care or taking kids to appointments.
When my boys were diagnosed with autism, I understood that the dreams I had for my boys and myself had to change, and I learned to love those changes and adapt to them. I made new dreams for myself and believed that, with my husband, we could somehow create a different vision for our life that could be as equally fulfilling. I had a partner in crime who understood the sacrifices I was making because he was making them, too. We knew we couldn't have the same life other families could, but we knew we could still have a good one. We shared the responsibilities, the frustrations and the joys, too. I was at peace with the hand that life had dealt and he was, too. Or so I thought.
I don't have a next phase to look forward to, I only have endless years of this never-ending toddler phase.
Our marriage ended a few years ago. It happens, and it certainly isn't a surprise given the odds. I believed that even apart — he would still be my other person who would share in the highs and lows and responsibilities of parenting our boys. When he left us, I never could have fathomed that I'd now be on my own in this. My little family lost the other who was our only chance at having a fulfilling life. "Impossible" is a word I'm not supposed to use. But my dreams for myself and my boys now seem impossible.
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Any dreams I had of travel are gone. Any possibility of ever dating again is out of the question. I don't have a next phase to look forward to, I only have endless years of this never-ending toddler phase. There's no magic year to look forward to when my kids will graduate — that's actually the year when this gets even scarier. When we don't have a place for them to go every day while I have to work so we can survive. I hear my friends talking about the day when they'll become empty-nesters and can live out their dreams of travel and hobbies and reconnection with their spouse. I have accepted that my life path won't be filled with those things, but how I'd love to have something to look forward to.
These confessions are best said in the quiet of a single parent's own mind. Keeping our heads down and burying these truths keep us strong and indefatigable. But spoken aloud, hopefully these truths can offer strength to the others out there to know they're not alone, and compassion from those whose futures look a little lighter than ours.
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