Updated: Mar 8
I’m “Chas”, solid nickname. Real name is Sasha. I am a 30-year-old single mother raising an incredible 2-year-old who happens to be neurodivergent.
Throughout this post I will be sharing a look at what a typical day looks like for us and some of the difficulties and we face. I will also be addressing some frequently asked questions I receive on social media that may or may not be low key offensive, but whatever.
I hope this gives you a better understanding of how our life is with some tips and information if you are in the same boat as us. If not, here’s an opportunity to get to know Shay and I more.
With that being said, even though Shay is only two, I do want to protect her privacy. When she is older, she may not appreciate her life experiences being all over the internet, or she may choose to share an ever deeper glimpse into her experiences, that is her choice, not mine. So, as I share some of the situations we face each day, I won’t be deep diving into all of it to respect her and her choice.
A little info before we get started:
Shay is non-speaking currently. She makes some noises and has certain sounds for when she’s happy or angry, but that is it. This requires me to play detective in deciphering what she wants and needs. I spend a lot of time analyzing her behavior and her mood to figure out what she is communicating to me.
Because she can’t tell me what’s wrong, what she needs and wants in words, I have become very good at picking up on her tonal fluctuations and her temperament levels. They tell me everything I need to know… Most of the time.
This is probably the hardest part. I don’t always know what she is trying to communicate to me, I just have to figure it out every second of every day.
In addition, we have yet to get a handle on her mood swings which are often and overwhelming for both of us. This is something I am hoping her therapists can shed light on, but they have yet to do so. This is something I am actively trying to figure out so I can help her better regulate herself and also allow her to figure out how to self-soothe in ways that are not harmful to her. I know that’s vague, but again, I don’t want to be sharing everything without her tiny human consent 🙂
I think that’s it for now…
Here we go!
FAQ #1: Was Shay Planned? She absolutely was planned. As planned as can be. I was taking ovulation tests and monitoring my cycle like a crazy woman in hopes of conceiving as soon as possible. I was very eager to become a mom and start a family with my ex-husband.
We usually start our days at 6:30am, but lately Shay has been struggling with sleep… again. Our mornings start as early as 4:00am or 5:00am on a good day. When Shay is in a routine She’s up at 6:30am.
Shay has been struggling with her sleep cycles since she was about 10-months-old. Maybe one year… I can’t recall, it’s all a blur! As a newborn and infant, minus the constant night feedings, she slept like an absolute angel.
Once her sleep issues started, there was no return to normalcy. She would go to bed around 8pm, be up from 1am-5am, and sleep 5am-8am. It was brutal. This happened every single night. At this point I was already a single mom so it was all on me. Whilst working two part-time jobs and freelancing.
After her autism traits became more prevalent and I started reaching out to her doctor, I became aware that sleep disturbances are common in those that are neurodivergent.
Depending on the person, because everyone differs from one another, it could be insomnia or her body needing sensory input that wakes her up. What I’ve noticed is that as her sleep cycle fluctuates and she comes out of a deep sleep cycle, she wakes up and immediately has a hard time relaxing again into sleep. She becomes a little agitated.
In addition to autism, Shay has Sensory Processing Disorder. A diagnosis of autism and SPD together is pretty common. What this means is that Shay has a hard time with processing her senses, noises, bright lighting, touch and feel, smells, tastes, etc.
Summed up, Shay basically feels like she’s under water all day. That feeling of being buoyant. Unable to feel grounded or have a true understanding of where her muscles and limbs are. A lot of things she does throughout the day is her way of feeling her body. She’ll run into things on purpose or thrash against pillows or the couch on purpose to get proprioceptive input. You can read more about that here: What is Sensory Processing Disorder?
When she wakes up so early, her body needs to feel where it is at in space so she results to stimming behaviors. Stimming is repetitive movement or noises that one makes to cope with anxiety or overwhelming feelings. Think of bouncing your knee when you’re anxious. These stimms can be as simple as rocking back and forth or progress to self-injurious behaviors (SIBs).
When Shay wakes up and she’s tired and coming out of a deep sleep, it triggers big emotions and she needs her comforts. Me, Mickey Mouse Clubhouse, and something to chew on. When Shay doesn’t get what she needs in those moments leading up to big emotions, it leads to a sensory meltdown. A sensory meltdown is kind of similar to a panic attack.
Shay gets scared, overwhelmed, and anxious and needs me to know she is safe. When I don’t get to her before she reaches that point it gets a little scary. She’s scared, mad, sad, needing comfort and needing to do what her body is craving and I am the only one that is capable of providing those things to her right now because she is so young. It takes a while for her to calm down from a sensory meltdown.
Hence the no sleep.
FAQ #2: How can a 2-year-old be diagnosed so young? Isn’t that too young for a true autism diagnosis? This one bugs me. I feel like anyone who asks this is automatically Karen’s cousin Susan. No offense to my lovely Susan’s… If enough traits/symptoms are prevalent in any one person, enough to match any type of diagnosis (autism or not), then no sweetheart, two is not too young for a diagnosis. 18 months is the youngest they diagnose autism and that is the exact age Shay was when she was diagnosed.
Alright, so we don’t have a morning routine that looks like anyone else’s or so it feels. Shay immediately needs milk because that is another comfort for her. She does pea milk because she is gluten-free and vegan (I will post about why this is another time).
Once she gets her bottle, she gets a diaper change, and we are back to Mickey Mouse and running around the house. Shay likes to play around for an hour or two in the morning before having breakfast so that is what we do!
My approach to parenting her is keeping her mood regulated and happy within boundaries. She knows what she can and can’t do, but I give her a lot of independence to pick and choose how she spends her time as long as it is in her best interest.
Once we have breakfast, I keep her solely in the kitchen/living room area so I can work for a little. The TV is on in the background all day long, so Shay can listen to Mickey. She rarely stands or sits in front of the TV for longer than 1 minute. She just likes to hear it and glance over from time to time. Again, mood regulation for her right now is my only concern.
Shay is not a morning person, which is not surprising because I am quite literally the worst until about 1:30pm. Shay isn’t happy until after her nap which usually is at 11:30am, so you can only imagine what days are like when she doesn’t want to nap. Quite literal hell, but that’s toddlerhood for ya!
Autistics, including Shay, are very dependent on routine. All kids are, but for her it’s like her body needs routine. Transitions from one thing to the next are very, very difficult in general, so when she is overtired and can’t figure out how to help herself and get to sleep, it throws the whole day off which intensifies any emotions.
This then results in some stimms that are not in her best interest, but again, I want to protect her so I will refrain from speaking on it.
On a good day, Shay naps for two hours and wakes up with the biggest smile on her face and she is very regulated for the remainder of the day with few tantrums or outbursts.
Lately, that hasn’t been the case, her naps and sleep schedule is all out of sorts and it’s affecting both of us deeply.
From my standpoint, those are the most productive two hours I have in my day. I use those two hours to workout, clean, shower, and do laundry. When I don’t get those two hours, my entire day is off kilter, just like Shay’s.
If she doesn’t get her nap in, that means she will be napping later in the car…
FAQ #3: Do you have any support or help? Yes, my entire family is incredibly helpful in addition to having some amazing friends that would drop everything and run to me if need be.
If Shay naps, she wakes up usually around 1:00-1:30pm and has lunch immediately. She is someone who thrives on routine as stated above so she likes the same things every day.
Shay prefers to only eat eggs, yogurt, strawberries, peas, toast, plain pasta, sometimes pizza and cheese (all vegan and gluten-free). Introducing new foods is a huge challenge for her as she is very avoidant of anything that is different to her. She likes what she knows.
It is a work in progress for us that unfortunately ends up with almost all new food items on the floor and wasted.
Once she’s had her lunch we clean up and we go for our daily drive. This is a huge moment in her day.
Driving makes Shay so happy. She loves the movement and visual stimulation. She also will take her nap in the car unfortunately if she has yet to nap which is super unproductive for me and leaves her pissed off, but girls gotta sleep!
We usually drive for an hour through canyons with ocean views and cool farmlands with horses and bulls. It’s a nice break in our day and again, she loves it! Like stated earlier, this part of her routine is where she regulates. She calms down and she enjoys listening to music, especially J.Cole or classical piano… she is so versatile!
Once we get back we have a snack and run around some more. Shay running around the house is super duper important because she’s releasing energy. So although I don’t sit down at all during the day, it helps her stay emotionally grounded while also helping her sleep at night, sometimes.
Then it’s bath time and dinner time.
If it’s a rough day, we drive multiple times a day for 45 mins to an hour each time. It’s a lot.
FAQ #4: But she’s a toddler… How can you decipher her behavior from being a toddler to autism. This actually is what makes things a little difficult right now because we are dealing with two separate situations. She is an autistic toddler. She is doing what any toddler does, she wakes up and chooses sass and boundary testing. All while not being able to adjust to her surroundings, unable to thoroughly process her emotions, unable to self-care, in addition to struggling with SPD.
It’s a lot going on for a little 24 lb. person. Autism isn’t a matter of being immature or child-like. It is a developmental challenge. Her brain and development is at a younger age than what she actually is. So you decipher it like you would anything else. What are the usual toddler behaviors and what are escalated?
Evening and Bedtime! Hallelujah!
At this point the day gets easy. After dinner we play even more can you believe? We check-in with Mickey, see if anything has changed at the Clubhouse, she has a bottle before bed, and she goes to sleep SUPER easy. She eagerly jumps into her crib and knocks out!
Then it’s finally me time, which consists of making dinner, cleaning up, getting work done, focusing on my to-do list, try to workout if I couldn’t, shower, put laundry away, check-in with friends, and go to bed.
Then we do it all over again, every single day! lol.
The Daily Hardships…
I would say the biggest hardship right now is Shay and our disjointed communication together. Like I said, right now we are relying on noises and tones of voice which is hard for me to always pick up on. She gets frustrated and I get anxious because I want to help her as best as I can as quickly as I can. Like I said, I’ve gotten pretty good at figuring her out, but I wish I could understand more.
Another difficulty is that Shay currently isn’t partaking in any imitation. Through imitation a lot can be learned, but that is something we haven’t explored yet. She will imitate sticking her tongue out, that will help us greatly in life, and clapping. But that’s because those were things she learned earlier on in life.
On a more selfish personal note, the lack of time for myself is really difficult for me. I have four ventures and endeavors I am trying to create and cultivate that all surround this platform here, but the lack of time to work on my future goals and my future coin is seriously hard. I am Shay’s sole caretaker and my job is beyond 24/7, time is constant, it’s a lifetime. I love that I am her mom, but the need for balanced time is very much needed. I know that will come with time but it’s a hardship nonetheless.
Then there’s the typical toddler behaviors, food avoidance, the inability to understand WHY she can’t do certain things or go certain places which becomes a breeding ground for Shay trying to let me know who is boss. She is sassy and determined I’ll tell ya that!
Working with her in terms of activities and with educational toys is another hurdle. She is very adamant on playing with a toy the way she thinks is best which usually goes against the teaching moment of that toy. This was something I tried to correct earlier on, but I found it to be counterproductive. At this point, I show her how the toy was designed to be used and then let her take it from there. Sometimes she follows my lead and sometimes she doesn’t. Certain toys like shape sorters she gets and she nails it! Other toys like puzzles and magnets are much better to be chewed on or lined up… It’s just how her brain operates. At this point, I am not discouraging her from exploring toys in her own way.
FAQ #5: Why did you get divorced after being together for 8 years? Because I wanted to…
Some Tips I’ve Learned…
I want to give Shay the best opportunity at independence. She hates that I follow her around. She wants her own space, I get it girl, so do I! But, at the same time, I need to watch her like a hawk, so I find that allowing her the freedom to roam the house while I’m a few feet away is great for her. She always comes back to check-in which is new and exciting!
Also, I’ve found a trick when it comes to eating! This is a huge challenge but since she LOVES to line everything up, I’ve taken that observation and I line up all her food in groups. Everything is separated and horizontally lined up and she gets really happy about that.
In terms of assisting in altering a behavior that is harmful; Create a consequence that is safe, not stimulating, but maybe not ideal. For instance, when Shay hits her head in frustration, I grab this soft-foam helmet I got her and I put it on. I communicate that hitting her head is dangerous and if she feels the need to do so she has to do it with her head protected. Shay does not love her helmet, so after enough times of realizing head banging = helmet, she stops and finds a different way to express her emotions which usually is her coming to me upset which I prefer, or jumping and falling on the bed which I am all for! It’s a great way to get proprioceptive input while also feeling a little “reckless”.
If you find your child needs input to their head, try putting them upside down! The rush of blood feels good and it’s also fun and funny to be upside for a short while.
Another tip, do not force anything. Just because your child is different or as society says, “disabled”, it does not make them less smart or unaware. Let them make some decisions on their own. At the end of the day your child is not broken and doesn’t need altering. Lay the groundwork for nurturing their uniqueness instead of trying to fix them. There is nothing to fix they are perfect in their perfect way. The less I’ve tried to force daily activities and learning opportunities on Shay, the more she has been eager to progress and learn by OBSERVING me. Let them be proactive.
Well, I think that’s it for this post. Like always if you ever have questions or just want to chat, my comments and email are always open!
Stay safe, friends.