What Really Matters at the End of the Day

As a parent of a child with special needs and an advocate for families of special needs children, I strive to stay as positive as possible. I make every effort to provide helpful tips and strategies to families that on most days work with my own family. But today, I am delivering a real glimpse into the raw reality of having a loved one with autism.

The Morning

My autistic son, Barclay, is five years old. He is the youngest of my four children and currently the only one still living at home as his siblings are grown. He usually attends a behavior center 30 hours per week. However, a week ago, he tested positive for COVID-19, so we are in quarantine for 14 days. The disruption in routine has caused him to be more dysregulated than usual.

As far as the COVID, fortunately, he is now asymptomatic and feeling well. But I think fighting the virus has made him more tired because he didn’t wake up until 9:00 am this morning. I heard his sleepy, sweet voice on the monitor calling for me, “Mom, I am awake!”

I walked into his room, expecting a happy greeting but instead hear, “Mom, go away. I am angry because I wanted to lay in your bed with you and Daddy, but it’s already sunny, so I have to lay on the couch.”

I told him he could still lay down with us, but he refused. Because it was morning, lying in bed was no longer an option to him. I just laughed and walked out of his room and headed to the kitchen. Sometimes his rationale for things is quite comical.

Eventually, he followed me into the kitchen. I made him his cup of breakfast, Pediasure and milk—getting solid food into him before noon is a rarity. Then I whipped up his morning meds in a splash of juice. In addition to ASD, he has profound ADHD and anxiety. He takes these meds three times a day, and without them, the severity of his symptoms is more than he can manage.

My husband soon joined and helped me get him changed out of his pajamas and into his cozy clothes (athletic shorts and a t-shirt), which involved setting the timer multiple times. Most transitions in our home involve the use of a timer.

Due to COVID, I am homeschooling him this year, so lucky for him, he gets to stay in his cozy clothes all day. But his first cozy t-shirt doesn’t usually last long. He has started chewing the necks of his shirts, and we must change them several times a day. This is a new behavior; again, I attribute to the disruption in his routine.

Dad went into his home office to work around 10:00 am, so Barclay and I started Mom School. This is the best part of the day. He is an enthusiastic learner, and we effortlessly transitioned between Circle Time, to Language Arts, to Math without a hitch. By lunchtime, we were on a roll.

Lunchtime

Food is a trigger for Barclay. He doesn’t care to eat. I jokingly tell people he is a Breatharian, but it really isn’t funny. For him, food is in the way of whatever he wants to do, which isn’t eating. Due to a recent concerning weight loss, he was supposed to start feeding therapy last week. But again, COVID made its ugly appearance in our home, so that is on hold.

For lunch, we typically let him eat his highly preferred food of mac and cheese. Getting him to eat lunch usually involves giving him an iPad and pausing it every few seconds and directing him to take a bite. 

After lunch, he got another dose of medication, which he took in small sips with the use of a timer, and finally, we were at the halfway mark.

The Afternoon

Today our afternoon involved a robot craft. I am not artistic in the least, so I purchased a craft kit subscription for him that includes directions and all supplies. We were busy coloring our robots when I noticed Barclay drawing on his arm. I told him to draw on the robot and he said, “I can’t draw on the robot. I can just draw on me, Barclay.”

I again attempted to re-direct. And he more loudly proclaimed, “I can’t draw on the robot. I can just draw on me, Barclay!” I told him we are done drawing if he is going to draw on his arm, and he wasn’t too happy about it, but we ended the craft and washed his arm.

Next, we began to put together a puzzle. Initially he was enthusiastic, but lost interest within a few minutes and grabbed his iPad, which I forgot to put away, and disappeared into another room. I kept putting the puzzle together and encouraged him to engage. He was not the least bit interested.

He eventually joined me in the room but began to build a train track rather than helping me with the puzzle. The trains kept derailing, so he threw them against the wall. I instantly realized I forgot to give him his afternoon dose of medication, which I immediately made.

After taking his medication, we talked about throwing the trains might break them, and I reminded him they are his favorite toy. He told me he was sorry and helped me pick them up. Even though he often can’t control the impulsivity of his frustration; when it’s over, he usually realizes what he did was wrong, and he’s improving in the apology department.

At 3:30 pm, he was supposed to be on a Zoom call for an online program with our local CARD (Center for Autism and Related Disorders) center on Interoceptive Awareness, learning to recognize how your body feels on the inside. I was thrilled he made it into the program because Interoceptive Awareness can be a huge struggle for children on the autism spectrum. 

About five minutes before the call, I set a timer to help him transition. He was again playing with his trains, and he announced he wasn’t going on the computer. I ignored his statement, and when the timer went off, I logged into the Zoom call. Much to my surprise, he joined me and participated in the entire 45-minute lesson. The session was on the feelings and sensations associated with the hands and feet. He enjoyed the activities, which involved things such as squeezing your hands and wiggling them and rubbing ice on your feet and describing the sensation. 

Late Afternoon

After the Interoception lesson, he needed to go potty. He went into the bathroom and closed the door. A few minutes later, I heard the water running, so I opened the door to check on him. Because he was standing naked at the sink, I could see he had done a poor job of cleaning himself.

When I tried to help, he screamed, “I need space!” When he says he needs space, we try to honor that. But in this instance, I couldn’t since he needed to be cleaned appropriately. Despite his protests, I cleaned him and got him into fresh clothes since he had chewed the neck of his t-shirt into a saliva mess (fifth shirt of the day), and his underpants were messy because he didn’t make it in time.

Dinner Time

I made him some of his highly preferred foods, pasta alfredo, corn on the cob, and a few strawberries and blueberries for dinner. I sat the plate at his little table where he was sitting. He wasn’t happy to see the food and immediately said, “That is yucky!” and angrily lunged toward me, and attempted to hit, kick and bite. 

He then ran and hid under a coffee table. I gave him a few minutes, then pulled him out and told him he needed to eat. Again he attempted to bite me and ran off to hide. I found him and put him in his room and told him he couldn’t come out until he agreed to eat. Every few minutes, I would open the door and ask, “Are you ready to eat yet?” After about the fifth time, he said yes and willingly sat and ate most of his dinner. It clearly just had to be on his own terms.

After dinner, we give him supplements mixed in either a dollop of yogurt or canned peaches. He takes L-methylfolate for a gene mutation, and Omega-3’s in the form of fish oil. Tonight he chose yogurt, and thankfully he finished it all.

Bath Time

He usually resists the transition into the shower or bath, so it’s always a combination of choice and a timer. “Do you want a bath or a shower?” then “Okay, two minutes shower.” Next, there is some chasing and coaxing to get him in. Once he’s in, it’s a challenge to get him cleaned and rinsed. Then we must set a timer to get him out. Overall it is about a 45-minute exhausting process. Tonight was no different. It had been a long day, but finally, it was bedtime!

Bed Time

After his bath, rather than tell him it was time for bed and deal with more potential issues, my husband and I went into his room and started a very animated game of Rock-Paper-Scissors. He heard us and wanted to join, so he came into his room. We have learned if we make what we want him to do fun, he is more willing to do it. 

We played the game several times and eventually declared Dad the winner with the prize picking the bedtime story. My husband picked Barclay’s favorite book Green Eggs and Ham. After the story, Barclay grabbed a few books for himself and headed up the steps to his loft bed.

He loves to look at books until he falls asleep, so we handed him his little flashlight, and Dad turned on his moon nightlight. We told him goodnight and gave him a big hug. He said, “Goodnight, Mommy and Daddy! See you in the morning. Have a good sleep!”

Mom and Dad’s “Wine” Down Time

We stood silently outside his door for a few seconds to see if we would get a call-back – surprisingly, there wasn’t one tonight. I fell into my husband’s chest, and we hugged for a moment. I wanted to cry. Why is this so hard?

I dropped to the couch just as my husband brought me a much-needed glass of red wine, and we watched some mindless TV for a few hours before heading to bed. 

Things that for most families come easy don’t for our family. Getting our son dressed, fed, showered, and teeth brushed (which I forgot today, so another fail) are all giant hurdles that require much effort. And this is just when we are home; the challenges we face outside our home is a whole other story.

I share this today not to complain or for sympathy. But because I want you to know you are not alone. I need you to know I understand how difficult being an autism parent can be. Even good days require monumental effort.

But, I also know the rewards of being a special needs parent, the triumphant feeling of each small success! As difficult as parts of today were, there was also so much that went well and there is so much I am thankful for. Tonight my son went to sleep healthy, safe, clean, fed, happy and loved. And at the end of the day, what more does any parent want for their child.

Autism – Where hearts melt and hearts break on a daily basis, sometimes at the same time. Autism is hard. Love is easy. My child is worth every moment. – Fiona Goldsworthy

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Amy Nielsen lives in Orlando, Florida. She is the proud mother of four children ranging in age from 5-33! She and her husband, Brent enjoy sports and traveling. Amy is a former teacher with nearly 20 years of experience, a freelance writer, and a special needs advocate. Her mission is to help educate and empower families of children with disabilities to focus on their child's interests and strengths.