I have shared many snapshots of my life as a mom of two boys with various diagnoses and special needs.
You’ve seen the pictures of me with messy hair and cups of coffee. I have discussed the difficulties of not getting enough sleep and managing meltdowns. I have even written several other day in the life posts related to how we homeschool.
What many of you have been asking for, over and over again for more than a year now, is a look at one complete day – not necessarily focused on our schooling, but more about the day in, day out realities of mothering children with differences.
I have been hesitant to write this post. The reason? I want to share something that helps to encourage and support any parent who cares to take the time to read my messy writing.
I have been worried that sharing all the details might be too much and frankly, too depressing.
Something I watched yesterday on YouTube completely changed my mind. A mom shared her experience mothering a child on the autism spectrum. As she talked about the various goals they are working on in therapies – toileting, self-feeding, brushing teeth – she began to tear up. Her next sentence made my heart hurt.
“It’s the things that no one really sees, and that are of no consequence in other families, that are the hardest part.”
She’s right. It’s the parts that no one really sees that are the hardest. They are also the parts that we need hear about most. There is something about knowing that we are not the only ones and that I am not alone in all of this.
Her words convinced me to share a very real, very average day in my life as a special needs mom.
A Day In The Life Of A Special Needs Mom
5:45 AM – The alarm goes off and I quickly hit snooze. As I drift in and out of sleep, I can also feel a certain amount of anxiety building. I have so much I need to do. My son has educational therapy today – will he meltdown again? What am I going to cook that will work for both boys tonight for dinner? Will my youngest be stable?
6:10 AM – I get up and immediately head downstairs for coffee. Cup in hand, I sit down and say a prayer for my husband, my kids and our day. I remember a friend in the path of an approaching hurricane and pray for her too. Then I remember a friend in need of prayer for her marriage so I gulp some coffee and ask God to give her strength…to give us all strength. I quickly work on a few things for the blog.
7:00 AM – I jump on a conference call for my part-time, project management work. I work with wonderful people and I like thinking about something other than my kids for a bit, but the truth is, spending almost all of our savings to pay hospital bills last year has made this gig a welcome help.
7:45 AM – My husband, Mick, comes downstairs and I wave him over. He smiles as I hand him my coffee cup, pleading with him for a refill.
8:00 AM – Just as I end the call, my youngest comes in, plops down on the couch and begins to snuggle his service dog, Sammy. I grab his morning meds. and give them to him with a breakfast smoothie. We learned last month that his eosinophilic gastroenteritis diagnosis is accompanied by several serious allergies, including dairy, soy, gluten, and corn. Smoothies are our best friend.
8:30 AM – After watching a YouTube video about snake care, my husband asks my son if he wants to play a quick round of Overwatch before he has to leave for work. It gives me chance to run upstairs and get ready. I try not to feel guilty about a video game so early in the morning.
9:00 AM– Mick heads out for work and my son starts to pace a bit. He is nervous about his online educational therapy (which begins in an hour). He also is perseverating on getting an iguana for his next pet. Taking that as a cue, we head upstairs to take care of his existing pet reptiles. He visibly calms down when I put a snake in his hand. As he holds her, he tells me how well she is doing and how smooth her skin is. As he talks, I mutter words of encouragement and clean the cages. There are ten in all. Lots of smells. Lots of poop. I do it because it’s too much this morning for my sensory kiddo. Once it’s done, he takes out every single one, holds them and interacts. When we have made the rounds, we feed them all and head back downstairs.
9:55 AM – Ed therapy begins in five minutes and my son is complaining of stomach pain and diarrhea. Part of it is his illness. Part of it is anxiety. How much of it is each, I have no idea. I tell him he can use the restroom any time he needs to, but that he still needs to attend the online session. (I already cancelled one session last week and we are only two weeks into the school year. He needs the help, but it does add a certain amount of stress and pressure for both of us.)
10:00 AM – I call Sammy over and place him at my son’s feet. We start the session and his therapist is wonderful. She engages him immediately with a story about a snake she met at the zoo over the weekend. He relaxes and so do I. I head in to check on my fifteen year old. He is having a minor flare-up associated with his autoimmune illness so I have let him sleep in a bit. He is awake and reading a book in bed, trying to muster up the energy to get out of bed. I smooth his hair and tell him I can relate.
10:30 AM – 30 minutes in and my youngest is working so hard. I am excited to see how easily he is reading sight words (something we worked on for more than three years) but feel like a total failure when he can’t identify that the first letter of the first word in a sentence needs to be capitalized. I decide I am getting myself too worked up about it, and choose instead to be grateful that someone is helping him learn the basics of reading, writing and math. I finish up a blog post while he practices.
11:00 AM – Ed. therapy is over. He is smiling and proud of making it through, and I am glad I made him do it despite the stomach problems. He needs to move a bit, so we set up Beat Saber on our VR gaming system. He moves and hits the virtual beats to songs like Bohemian Rhapsody and Hotel California. I hum along and make oatmeal for all three of us.
11:30 AM – We eat the meal, take more meds, and I head in to help my oldest with his lessons. He is mostly self-sufficient, but he needs some support in getting started. My youngest is still playing the VR game and I hear the Star Wars theme in the distance. I get a call from my son’s immunologist office reminding us that he needs to come in tomorrow for treatment (read: shots). My son hears me talking about the appointment and begins to panic. “I hate shots. I can’t do it. You can’t make me,” he cries, struggling to catch his breath in what is heading towards a full-blown panic attack. I remind him how simple the procedure is. I remind him how small the shot is. Then I distract him with talk of the new iguana he wants. It works and we are back on track.
12 Noon – My oldest heads in to take a shower. No resistance. No worries. Just a shower. It’s not always like this, so I am grateful and sigh with relief. As soon as he is done, we head out for our hybrid school. In the car, we listen to the end of our current audio book. I am worried about what we will listen to next. I rely on audio books to keep everyone calm in the car. My youngest has made it through the entire Harry Potter series at least four times now., so we are re-listening to the Percy Jackson series, but it does not engage him in the same way. When the book ends, we turn on some music for the last bit of the drive. Listening to my sons sing along with Elton John’s Tiny Dancer has me grinning from ear to ear.
1:00 PM – My oldest heads into school. My youngest also has a class in about an hour. He can go and hang out beforehand, but he is worried about his stomach. He stays in the car, lies down on the floor of the van and snuggles Sammy. We watch a YouTube video about the ancient Greeks and he uses his inhaler to try to calm down his gastrointestinal tract. He says he is still too anxious to go inside, so I let him turn on a Dude Perfect video while I look over my to-do list.
1:45 PM – My youngest and Sammy head into school and the car is silent. It takes me a few minutes to get my bearings. Sitting in the silence feels good, but I also feel the emotions rush in. Being hypervigilant about all the things – the food, the meds, the school, the anxiety, the panic – it takes its toll. I blink back tears and decide to relax a bit. I read a book for a while and then pull out my laptop. I outline a few blog posts, respond to emails for both the blog and my project management work and then call to schedule next week’s doctors appointments for the boys. Finally, I lay my seat back and close my eyes for a bit.
3:30 PM – My oldest son texts that they are on their way out. He does this every day. I am not sure why, but I like it. I wake myself up a bit, put my shoes back on and try to look alive. The boys both come in, happy and excitedly talking about their classes. I think about how much I adore this school and their teachers. A sense of gratitude floods my emotions and I fight down good, happy tears. The mood changes quickly though when my youngest realizes he doesn’t know which audio book he wants to listen to on the way home. My oldest puts in his headphones, knowing it’s about to get loud, and listens to music. My youngest melts down. Quickly. We went from happy to anxious and angry in about 10 seconds. He flails his arms and legs. He dumps out his water. He spits on the windows. We wait. Every once in a while, I offer a suggestion. Finally, he calms down enough and agrees to try The House With A Clock In Its Walls. We listen and talk about what it would be like to live in a small town.
4:50 PM – We arrive home, finally. Traffic and meltdowns will delay anyone around here and I am worried about my youngest. Although we made it home without any additional issues, he is clearly struggling a bit. I ask my oldest to go to his room and work on his computer build. He leaves just as his little brother begins banging his head on the wall. This head banging is something that happens when he is quickly losing the ability to cope. It is also something that can injure him, so I work to help him make better choices and shield his head as much as I can with a throw pillow. As I am offering him a piece of ice to hold in his hand (something his psychotherapist recommended as an alternative) his older brother comes out of his room, furious. The noise of the banging on the wall is clearly aggravating his sensory sensitivities. He begins to yell, “Will you just be quiet?” and pace back and forth. I step in between them, physically keeping them from one another. I feel like Chris Pratt in Jurassic World, trying to keep the velociraptors calm, holding my arms out and looking back and forth between them while speaking calmly.
5:30 PM – While still a little anxious and snippy, I can tell they are both calming down. My oldest is the first to regain composure and when he does, he starts trying to help me with his little brother. He asks him about a Caiman Lizard and they both begin talking about the most exotic reptiles they can think of. I sit on the couch between them and try not to worry about if my youngest is headed for another mood episode. I can’t go there, not now. Instead, I smile and mouth thank you to my oldest. He smiles back and says, “Meow.” It’s his way of saying he understands. I smile again. My kids never cease to amaze me.
6:15 PM – The boys are watching YouTube videos about lizards while I mindlessly scroll though social media when my husband walks in, home from an unusually short work day. I practically sprint to the door and squeeze past him, muttering something about needing to go get the mail. Outside, I notice the breeze and the perfectly warm evening. Feeling a bit better, I head back in. After I explain to Mick how the last two hours have been, I go upstairs to our room, unmake the bed and slide under the covers. I stay here, praying, breathing and trying to calm down my own anxiety.
6:45 PM – I make my youngest an allergen friendly meal while my husband and oldest order something from Postmates. I have been worried about the money we spend on silly things like this, but right now, I could honestly care less.
7:30 PM – We have all eaten and my youngest decides to play a little more Beat Saber. My oldest continues to work on his computer build while my husband does the dishes and I fold the laundry.
8:15 PM – I dole out nighttime meds. We all crash on the couch and watch random YouTube videos with funny home videos and fails. My youngest is giggling and I smile. It’s my favorite sound in the entire world.
11:15 PM – I wake up suddenly on the couch. My youngest is sleeping next to me and it’s clear that my husband and oldest son have gone to bed. I look over at my son. His face looks the same when he is sleeping now as it did when he was a baby. So sweet. So calm. So peaceful. I put my hand on his leg and pray for him. Then, I wake him up and we walk upstairs to bed, hand in hand.
The Realities Of Special Needs Motherhood
This account is by no means our best day. It is also not our worst. This is just a Tuesday for us.
As I read my own words above, I want you to know one thing that may not be clear in the details – I am grateful for my life. I am grateful for these kids and the chance to be their mom. This day is so much better than an account I would have given just one year ago, thank God.
We are making progress and we are doing it, one day at a time, together.