My son is empty. At least, that’s the word that could be used to describe him. He doesn’t seem to have the ability to make choices of his own; to like things of his own; to do something on his own. He is empty. He lacks the sense of self that allows people to be individuals, to have their own opinions, likes and dislikes. He is always looking for input on choices. It’s subtle; a slight glance at his older brother or a whine of, “I don’t know, I can’t think,” until the choice is made for him.
I’m trying to understand what it’s like. There are times when I’m “snacky” but I don’t know if I want sweet or salty. Sometimes I choose and it’s the wrong choice. I went sweet, but it turns out that I really wanted salt. Other times, I simply walk away, because I just can’t decide. Is that what he deals with every day, all day? Every day there are hundreds of little choices to make: what clothes to wear, food to eat, do I have to go to the bathroom at this moment or not, activities; and yet each choice becomes this impossible thing for him so he whines and laments his inability. Then Mom and Dad get frustrated and the whines turn into overload-meltdowns because he just can’t do it! How do we deal with this? How do we help him?
I’ve been dealing with my own emptiness too: the empty feeling of burnout. I have grand ideas but, as I sit down to attempt them, I feel nothing. I’m usually a doer, a crafter, a just-get-it-done kind of person. Lately, however, I just can’t. I haven’t been able to write or do any artsy/crafty/me-time type activities in over a month. For example, the other day I sat down to color in an awesome grownup coloring book that my sister gave me. I got out my personal art supplies and picked a page that seemed somewhat easy. And then I stared at the page for like five full minutes before I got interrupted by something and then it was so easy to let those other things get in the way. Finally, I put my art stuff away and I realized that I felt relief. I was overwhelmed by the idea of committing a color to the page. “What if it didn’t look the way I wanted it to,” “what if… what if…” There were too many choices to make. Too many chances that I could get stuck with something that I didn’t like. I locked up. My art brain checked out.
Then I found that I’ve been feeling that way in other situations. I am happy when plans fall through because I just can’t deal with socializing. I just want to be left alone. Day in and day out I’m pulled in different directions by two kiddos with different (and often opposing) special needs, and it’s exhausting! I am empty. I have no more to give when the day is done. I push through the day, anxious for bedtime so that I can curl up in my wonderful bed and relax with a book, a TV show or video games – something in my own world, with no commitments.
I rarely have time for myself to recharge. It seems that everyone stresses the need to take care of yourself, but when is there time? How do I achieve this when I’m the sole at-home caretaker (with health issues of my own) and the hubs is the sole breadwinner? We have friends, but not the kind that have time themselves to jump in and help – they have kids of their own and, to be honest, we are the only special-needs family in our immediate circle.
Even the most supportive of friends don’t always “get it.” They don’t see the meltdowns that come from overstimulation. “Every kid has tantrums/meltdowns/defiance.” Not unkindly meant but, meaning that we are no different than they are. But we are. When my kid is crying because he doesn’t want the dinner we put in front of him and he doesn’t know how to express himself because he can’t get the words from his brain to his mouth, it’s more than a simple tantrum over the food. We need a different approach. We have to try to coax the information that he doesn’t know that he has out of him. We have to help him understand what his choices are and make a few suggestions because he can’t decide.
I think of it like a cookie jar. I started my journey of motherhood with a huge jar, full of cookies. Every day, every trial, every obstacle we’ve faced, has taken a cookie from the jar. I have no time to bake more, no one else is baking any to fill it up, which means that the jar is now empty.
I give freely of my time, i.e., cookies. (Bad mom moment: giggling about innuendos.) I love being a mom (most of the time), and I love my family, special needs and all. I’m just empty inside. I have no way of refilling myself to keep going but, I push on. Cookies get broken in half to spread them further, then I give out crumbs. When you have no one to turn to that you trust will just get it, will jump in and help, will try take care of things the way you would (especially when there are people that you should be able to rely on but don’t make themselves available), what do you do? How do you recharge? Where do you find that “me” time that you need in order to take care of yourself?
Exercise is really helpful; it puts me in the right frame of mind for the day but, when can I do it? Do I sacrifice the limited sleep I already get to get up and do it first thing? That’s probably a good idea but, guess what? The kids follow me to the garage and watch and/or talk to me while I’m trying to tune out on the treadmill. Want to take a walk outside? They and the dog have to come along too. Do I wait and do it in the evening when Dad is around to help with the kids? Also a good idea but, I’ll just have a harder time sleeping from the energy boost. I don’t like exercise, but I do it for myself. I just don’t find it giving me that recharge that I’m looking for.
Regular checkups at the doctor? Yes, that’s a good way to take care of yourself. Those are very important. I’ll go in, dragging my two little monsters behind me because, where else would they be? But they’ll just roam around the doc’s office, playing with anything they can get their hands on.
Recently, I went in to have a large skin tag removed from the back of my knee. I got the lidocaine shot and the doc steps out for a moment while it takes effect, and the kids are all over the place, opening cabinets and touching everything in sight. Thank goodness we have an awesome doc who just rolls with it. I know that we’re not the easiest of patients. So, there I stand, pants rolled up above the knee with my back to the doc and the ever-inquisitive Mr. C is asking a million questions about what the doc is doing. The sounds of excitement when he learned that the doc would be using a knife rather than freezing… I was almost scared! I swear, he would have eagerly grabbed a scalpel and cut the tag off himself! This little one has a dark side I think. HA! Needless to say, doctor visits with the kids are never easy, often embarrassing, and sometime traumatizing, and I hate going. So I often put it off.
What else can I do to recharge? Read? Only if I want to read a sentence or two in a few hours. Try to bake? Cook something new or be crafty in some way? Only if I’m okay with the children butting in, touching things, getting in the way, or taking over. How about going into my bedroom sanctuary and relaxing? Trying to sleep in on a given day? No to both. The children will find ways of taking that too. They love to snuggle and that means lying next to and on top of me while talking non-stop.
One place that is always part of a joke is the bathroom. Maybe I could take just a few extra minutes? That’s not really easy in our current living situation where we have one bathroom for four people. Plus, thanks to Mr. C’s resistance to sitting on the toilet for any length of time, our therapist now wants us to announce that we are going in, and to wait a full 10 minutes so that he sees and knows that everyone else does it. He learns by observation, rather than by instruction. So now, they know where I am at all times! AHHH! It’s bad enough that we all have to share one bathroom, and that the dog follows me in most of the time because he’s going to panic if he can’t see me. Now, I have to announce it and sit and wait. Oh, if we had the room, I’d put in a comfy chair and stash snacks and books or magazines… maybe I could turn my 10 minutes into 30 and find that peace. Right now though, it’s a no-go.
I could go on, but this is getting depressing. I don’t mean to be negative but, I have to state the facts as I see them: I am empty, without much hope of a refill, and I have a child who is also empty. I have to push and struggle to find new crumbs in the bottom of my cookie jar to share and help my baby learn to make choices and learn to voice what’s in his head. Maybe one of these days, we will both come out the other side and no longer be empty.