A Day in the Life of a Special Needs Mom – narrated by: Natalie Lerner

Community Submission by: Anonymous

It’s 8:00 a.m. and I am awakened by the sound of J, my youngest son, kicking the wall next to his bed. I am so very tired. I feel like my actual soul is exhausted. 

I unzip J from his special bed, which keeps him safe at night. His whole room smells like pee. I sniff his sheets. Despite the fact that I washed the bedding days ago, it all needs to be washed again. J, age 8, was born blind. Around age three, he was also diagnosed with “significant global developmental delays and autism.” He still doesn’t speak. He isn’t toilet trained. He needs to be watched at all times because he does things like chew on electrical cords, eat scented candles, and guzzle hand sanitizer.

My husband has gotten D up, dressed, fed, and started on virtual school. D, age 12, has ADHD, generalized anxiety disorder, and “level 1” autism. He talks constantly and usually about topics no one else is interested in. I often wonder if maybe this is the reason J doesn’t talk—D got all the words. He stims a lot—usually frantic pacing combined with “pshew pshew” noises he makes with his mouth. He wasn’t super social to begin with, but his limited interactions during the last nine months have me afraid he’s going to end up all alone, watching never-ending YouTube videos, and urinating into glass bottles like a modern-day Howard Hughes.

an adult […] must sit next to him at all times

In the before times, both of my children were in school for eight hours each day, receiving services and supports from multiple professionals. But where I live, schools have been closed here since March (it’s December). Now, our days look very different.

I feed J breakfast and encourage him to eat quickly. He eats some cereal, but drops most of it on the ground, to the delight of our dog. (We recently switched from regular Cheerios to Honey Nut Cheerios because the dog won’t eat regular Cheerios off the floor.)

Once J has finished eating, I help him out of his special “autism pajamas” that zip up the back so that he can’t remove them himself and get into the contents of his pull-up. I put him in a new pull-up and fresh clothes. His shirt has several small holes on the front from where he has chewed it. I sigh, because it’s a relatively new shirt. I use a baby’s pacifier clip and attach a “chewy” to his shirt to encourage him to chew on something other than his clothes.

When he’s dressed, I sit him at the kitchen table in front of his school ipad and his assistive communication device (his “talker”) and log into his general education third grade class for morning meeting. J is unable to independently log into and out of the various apps his school uses for class, so an adult—usually me or our part-time nanny, since the school system cannot provide us with an aide or funding to pay for one—must sit next to him at all times to help.

[…] J doesn’t much like virtual school.

To make it work, I’ve gone from working 25-30 hours a week as a lawyer to working an average of five hours a week. We’ve also had to increase the time our nanny works, both of which have significant financial consequences. I know I’m incredibly lucky to have the flexibility to cut my hours without losing my job. I’m also lucky that we can afford help at home in the form of a part-time nanny. But my husband and I didn’t really discuss how we were going to split the additional labor of virtual school, and apparently we both assumed I, the wife and mom, would do most of it.

I check on D, who is working in our front room. I try to stay out of the view of both ipads’ cameras as I am still in my pajamas, braless with dirty hair. I return to J, and, while we are on mute, try to coach him through answering the “question of the day.” Although there are several other kids with special needs in J’s class, he’s the only blind child and the only child that uses a talker.  Today’s question is “What is your favorite genre of books?” Of course, his talker doesn’t have the words “fiction” or “nonfiction” or any of the examples the teacher provides. I improvise and ask him if he likes “real” or “pretend” books. He ignores me and alternates between crawling into my lap for a cuddle and trying to leave the table. When it’s time for him to answer, he says something nonsensical about liking books about “time.”

After morning meeting, we log into his special education class for math. We learn about division, which is difficult given that the teacher can only use visual aids to explain concepts. I explain the pictures she uses and J answers most of the math problems correctly. When math is finished, we log into a new session with his teacher for the visually impaired (TVI) for J’s Braille lesson. I learned the Braille alphabet when J was younger but I’m currently learning, along with J, “contracted” Braille, which is a more complicated, shortened version. His TVI and I discuss my request for an electronic Braille display for J. He hates the clunky, old mechanical typewriter-style Brailler that the school system has given him to use and I wonder if the learning process would be smoother with a newer device. I’ve researched the different devices, talking to other families of blind students. However, the newer devices are very expensive and the TVI is worried that the school system won’t buy him one until he’s more “proficient.”

Although he’s doing quite well, J doesn’t much like virtual school. It’s a struggle to keep him seated and attending to the lesson. He attempts to escape work by engaging in aggressive and self-aggressive behavior. We’ve learned never to wear dangly earrings or our hair down. We keep our chests and arms covered with layers and try to remember to keep his nails short and blunt.

Depending on the day, our nanny usually arrives during this lesson and takes over. I quickly wolf down a very late breakfast and check on D. Often he interrupts J’s morning lessons with IT issues he’s having with one of the seemingly infinite number of apps he uses for school. He’s smart and creative and funny but has minimal organizational skills and difficulty managing stress. He had multiple assignments due today that he hasn’t completed, so we sit down and create a plan for when that work will be done. The discussion makes him anxious, and he begins to cry. We talk through the techniques his anxiety therapist recommended and he calms. One of his assignments is building a model of an atom, and I silently curse his teacher as we brainstorm the materials that he, with his terrible fine motor skills, could easily manipulate. I’m pretty sure J ate the last glue stick.

[…] it is Wednesday, I haven’t showered since Saturday.

I head upstairs to check my work email and to respond to items that have accumulated in my inbox. During the next hour, our nanny texts me several times. She’s having trouble with J pinching and biting and wonders if I can bring her a sweatshirt to wear so that she can better protect her arms. While downstairs, I hear her frustration with both J and his teacher, who isn’t doing a good enough job describing the visual aids she is using for the lesson. I run back upstairs in the hope that she and the teacher can work the issue out between themselves.

At 12:30, J’s ABA therapist arrives. She’s his current favorite and he is generally much less aggressive and frustrated when working with her, a fact that hurts our nanny’s feelings. I come downstairs to check in with her and go over the recent assessment of him she completed as required by our insurance company. We also discuss how she’s currently fighting with the insurance company to get more hours with J. We are planning an intense toilet training program in the next couple of months that will require at least 40 hours a week of ABA therapy, which would cost us over $100 an hour if insurance won’t cover it.

I check in with D and remind him to eat lunch. His ADHD medication significantly decreases his appetite and he forgets to eat if not reminded. I suggest several options for lunch, but he requests Easy Mac—again—and only eats about half of the container. He doesn’t touch the sliced pears I put on his plate.

I head upstairs again and realize that a) I have a zoom work meeting in 15 minutes and b) I completely forgot my mammogram appointment that was scheduled for that morning. The zoom meeting takes priority because it’s on camera and, though it is Wednesday, I haven’t showered since Saturday. Luckily the meeting is internal, so casual dress is fine. I brush my teeth, throw on a bra, switch out my stained sweatshirt for a nicer looking sweater, and cover my greasy hair with a wool beanie that I knitted for one of the boys. During the call, a coworker asks me if the heat is out at my house.

After the meeting, I write myself a post-it to reschedule the mammogram. I start to feel a flush of anxiety. I was due for the follow-up mammogram back in May. There is a spot under my left nipple that is probably nothing, but they have me come back to get it checked every six months to make sure it hasn’t changed. Ridiculously, I was also looking forward to the quiet time with my book in the clinic’s waiting room.

[…] if I get divorced and need to date, my chances of finding a new partner are likely low […]

I check my inbox and see an email from the manufacturer of J’s talker. They sent us a loaner device months ago when his device broke. We were supposed to mail his back for repairs once we received the loaner three months ago. I’ve had it sitting on the dining room table since that time (along with about a dozen other items that need to be mailed or returned). I respond to the manufacturer and apologize. I promise that I will take it to the post office in the next day. I write another post-it reminder to mail the talker and then I put my head down on my desk and try to breathe slowly for five minutes. I can hear J sobbing downstairs. I know I shouldn’t go downstairs to comfort him like I want to: he shouldn’t be “rewarded” for crying to escape work. But I don’t think the nanny and the ABA therapist understand what it feels like to hear your child sob.

Since the pandemic began, I’ve steadily gained 15 pounds. This is in addition to the 35 pounds I already needed to lose. Doctors now give me handouts that list the risks of being obese. None of my clothes fit. Even my stretchy workout pants roll down under my increasingly girthy belly. I keep flashing back to something my husband said during marriage counseling in January about how I’ve “let myself go.” I know all the women he works with are thin and pleasant and definitely work more than five hours a week. I bet they run marathons and have very clean kitchens. I’ve recently fantasized about divorce (like many other women, if the articles my similarly situated friends and I are constantly forwarding each other are any indication). I worry that if I get divorced and need to date, my chances of finding a new partner are likely low in my current unwashed, overweight state.

Six weeks ago, I signed up for an online “health coach” and diet plan. I’ve tracked and planned and significantly cut down my nightly glass (or three) of wine. This week, however, I’ve haven’t eaten enough protein or drunk enough water. I confess these things to the health coach via text and vow to do better. She demands specifics. How will I do better? What is my specific plan for doing better? I wonder if my lack of interest in coming up with a specific plan is the reason that I’ve only lost four pounds in six weeks. I measure my waist every morning and remember the cable repairman who, two weeks ago, pointed to my stomach and wished me good luck with the baby. (I am not pregnant.)

He sweeps things off counters, opens cabinets and drawers, and tries to touch the lit stovetop.

I proofread and send the questionnaire that our new marriage counselor has requested before our first session this Sunday. She asks us to each summarize our “current problems,” and the form says I am limited to the space provided. I wonder if I can just write “I am exhausted and he doesn’t care” and leave it at that. I sought out this new counselor after losing my temper with my husband for the seemingly millionth time about the increased disparity in household responsibilities since the pandemic began. I am now angry all the time.

The nanny texts again. She and the ABA therapist have come up with a new strategy to combat J’s aggression that involves “over-correction” or making him apologize for each aggressive act three times. She instructs me that my husband and I need to continue this strategy this evening and going forward in order for it to work. I write myself a post-it note.

I head downstairs to relieve the ABA therapist who needs to head home. Her grandmother, her favorite person in the world, just died last week. We talk about her and the funeral and how her boyfriend hasn’t been very understanding of her grief. I wonder if the idea of a supportive man is just fiction. As she leaves, I get a text from my husband (from upstairs) letting me know he will be on work phone calls until 7:30.

I start the process for making dinner. J is newly curious and it’s like having a four-and-a-half foot tall, 50-pound toddler. He sweeps things off counters, opens cabinets and drawers, and tries to touch the lit stovetop. Multiple times I find him in the pantry with his hands in different containers, sampling all the snacks. D comes in and, without being asked, steers J way from the knives and the dinner ingredients, as he tells me about the Fortnite game he and his friends just played. I’m relieved to hear he was playing with other kids, albeit online.

[…] tumbleweeds of dog hair on the floor […]

My husband’s last call is cancelled, so he’s able to join us to eat at 6:30. After dinner, he takes his plate to the sink, rinses it and a few more dishes and then says he needs to go back upstairs to work. I snap at him. Could he please at least help me finish cleaning up the kitchen? He looks confused. What do I need help with? I look at the full sink, the food on the floor under J’s seat, the sauce spatter on the counter, pieces of the various snack items J sampled on the floor of the pantry, three days’ worth of mail on the counter, all of J’s Braille items on the island. Can he not see these things? I feel like crying. I roll my eyes and say something sarcastic and mean. He sighs sadly and gets a cloth and begins to wipe down the counters.

He takes J to bed on his way back up to his office. D and I agree to watch a television show. I decide that, despite my promises to my health coach, I need a drink. I turn on the heating pad I keep on the sofa for my back pain, sip my drink, and relax for a few minutes.

Soon, it’s time for bed. I send D upstairs to brush his teeth and put his pajamas on. I lock doors and turn off lights. I start the robotic vacuum, crossing my fingers that it will get to the tumbleweeds of dog hair on the floor before it invariably gets stuck somewhere.

When I get upstairs, I can tell D is starting to get anxious. For the past few weeks, he’s slept most nights on the sofa we have in our bedroom instead of his bed. We are trying a new strategy, where he stays in his own bed and pretends to be asleep for a certain number of minutes each night. It has worked the previous two nights and he has fallen asleep in his room on his own. After several false starts, it works again. J is still awake and in his bed yelling. He needs his pull-up changed. Once that’s done, he falls asleep quickly.

My husband comes to bed, and asks me how my day has been. I pause. “Ok, I guess?” He smiles, rolls over, and is snoring within minutes. I lie in bed thinking of all the things I have to do or what I should have done better. I still haven’t showered. Does it matter? The house is finally quiet.

Photo by Yvonne Stepanow from FreeImages

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