Tag Archives: guilt

Striking Balance

I like to hold books. I like simple, beautiful covers and plain, clear fonts. I like waxy heavy book open in sunshinecardstock that sticks to my hands. I like pages that hold some weight. I like the way words scrape meat off bones. So I try, in the dark hours of mornings, to spend some time with words, both reading and then writing. The window for my own pursuits is limited because I am a parent with a full time job and like most parents my greatest obligation is to my sons, the middle of whom is twenty and has autism.

Of course, it has always been my desire to be equally attentive to all three. Communication with Oldest Son (who is shacked up with his girlfriend in a city an hour and a half away, and is doing his best to avoid my guidance) tends to be in pithy text messages like: “Why do people wear socks with sandals?” “Reference Mom’s pinky toes.” “*Nauseated face emoji.*” I’d prefer an actual listening-to-his- voice type of conversation on the telephone machine, but I’m told that is passé.

Middle Son is like his mom, a morning person. He rises on an internal clock at precisely 7am during these summer months between graduation from a vocational program and the procurement of what we hope to be a meaningful position alongside neurotypical peers. When I hear Middle’s feet hit the floor, my train of thought tends to arrive, with a squeaky halt, at the nearest station; but not because he needs me any longer to navigate breakfast.

After calling a good morning he gets straight to the business of creation. Depending on what is in the refrigerator, he will collect suitable cooking tools and assemble ingredients. This morning he uses leftovers from his dad’s homemade tortilla dinner. Before setting the frying pan on the burner, he selects a tomato from the windowsill, slices it uniformly, then quarters each slice. He methodically chops a portion of onion and green pepper and gets out a bag of grated cheese. While he works, Middle practices conversations that I cannot help but listen to. Most of them begin with phrases like, “Oh, I’m sorry…” or “Excuse me, I didn’t understand…” The words that trail after are not discernable, but I have already left my words, and now I dwell in the full time job of fretting over all it will entail to conquer this journey of living.

After he plates his breakfast, if Middle is particularly pleased with the presentation, he finds me to share in the delight of food arranged beautifully. If there were a restaurant somewhere that was not concerned over having things done quickly, a job in the culinary field might be the best and most logical position. But for Middle, food preparation is more a hobby. Something he enjoys. And I’d hate for that joy to be muddled up with other people’s expectations over trivialities such as time.

When he takes his meal into the den, I hear the television click on which causes my concentration to compete with Spongebob or a Tom & Jerry soundtrack. If he comes in to say, “Hey, good news…” I don’t have the luxury of saying, “Not now! I’m trying to write!” I must stop what I am doing, and look into his eyes and listen. With all my heart. To something like, “New episodes begin on the Cartoon Network on September 3rd.” Because I know so many parents are wishing for such wonderful distractions. Because of all people in the world, I may be the only one who speaks his language. Because when he tells me about the episode where Spongebob gets fired from his job at the Krusty Krab, Middle’s eyes are nervous, even with me, worrying about whether he is speaking with “regular person” clarity.

Since we got his diagnosis at 2 ½, I have been determined to save Middle from becoming Boo Radley, only able to love from a distance. Only able to share his deep understanding through gestures left like talismans in a hollow tree. Lonely. Lonely frightens me most. Lonely is a horrible suffering. You don’t even get to blame somebody when Lonely is the bully. There is only the victim.

Youngest son is still in high school. Because he has a difficult time with beginnings, I read to him a couple days ago the first chapters of his summer novel assignment, Of Mice and Men. A lifetime after my initial reading, I come to the revelation that Lennie is quite complex. Perhaps even more complex than George Wilson. “This book makes me sad,” I tell Youngest. “Mom, it’s not that sad,” he almost scoffs. “Are you and Middle, George and Lennie?” I ask. He just smiles.

Youngest has always smiled when he was uncomfortable or frightened. It looked like a downright smirk when he was in elementary school – would get him into deeper trouble from someone who didn’t know him. And I didn’t know him for the longest time. So wrapped up in Middle Son, so wrapped up in all things autism.

Once on a weekend visit to my mother’s house, I happened upon a book on her shelf entitled The History of Names from the Bible. “It was a gift,” she explained. Leafing through, I found our youngest son’s name. There on the edge of her yellow chintz sofa, I remember a rush of guilt. “We weren’t trying to replace Middle, were we?” I asked. “Of course not,” she lied.

“Hey, Mom, I took my morning medicine and now I’m going to take a shower” calls Middle from the kitchen. “Thanks for telling me,” I say, and up he goes.

At this point, I will get my second morning for about half an hour, before proceeding with the less-inspired work of my day. Middle tiptoes up the stairs. He is quiet because Mom is writing and she needs to concentrate. But my guilt is big and so noisy.

 

 

Tracy has been a high school teacher for over 30 years and currently teaches creative writing and journalism.

Guilt Trip – No Postcards Please


Guilt! More Guilt! Lots of Guilt! That’s one of the things that I really got from the latest podcast, Wake Up To Sleep, even though it was about sleep. But guilt does surround us if our child is not sleeping. In fact, so many things we do as parents and carers to children with additional needs carry around feelings of guilt even when they’re not warranted.

Vicky Dawson from The Children’s Sleep Charity talked about how parents feel guilty when they can’t do something as basic as getting their children to sleep. They feel judged, and maybe we’ve all done it. Perhaps we’ve all once thought, well if those kids had proper bedtime routines…. But it’s a very small minority of parents who don’t care when their children go to bed, so in 99.99% of cases, the judgment is ill-informed. It comes down to what is expected of us as parents how our children should be according to some arbitrary “norm” and we all feel guilty when we fail to achieve this arbitrary gold standard.

Like many parents my guilt started very early with, “what did I do?” and “am I responsible for how my daughter is?” Of course, over time I’ve realised that’s not the case but, intermittently, those thoughts return and need to be slapped away.

Guilt when my daughter has to go to the hospital. This used to much more of a regular occurrence but now we are down to about once a month, so less guilt you’d think. Of course not! In fact, it has got a bit harder as she has gotten older and questioned why she has to go to hospital. We are in transition at this point from a children’s to an adult’s hospital, and although we have always tried to make sure medical professionals talk to her, not at her (not always easy), and try to involve her in decisions, there are some decisions she isn’t actually mature enough yet to make. These decisions may impact on her long-term health and potentially her independence. So with hospitals, there is a decent serving of guilt for putting her through things she hates, and she tells us she hates, but which we know will help her long-term.

Guilt she doesn’t have enough friends. This is my problem alone because as I’ve said before I’m not even sure she is one of those people (unlike me) who needs lots of friends. But as I’m responsible for her social life, then I get the guilt of feeling have I done enough?

Guilt she watches too much of her tablet. Yes, we ration her, but sometimes when she’s been busy and is clearly overwhelmed and needs time alone we do let her retreat. Maybe not perfect parenting but practical parenting and we do have every parental control possible on. However, as her favourite viewing choices are The Big Bang Theory and Friends, I’m claiming this as an educational tool!

Guilt about being happy when I have a break from her. I’ve got over this one pretty quickly when I realised she relishes this time even more than me. Away from parents means she feels grown up, independent and all the things she strives for. No need for guilt on that one.

I could go on but then I’d feel guilty for taking up too much of your time! So let me sum up what I really think about all this guilt. It’s not my fault but it will be at fault if I don’t do absolutely everything I can to give her every opportunity she deserves to live the kind of life she wants to live. So note to self, STOP IT!