One thing you should know about my family is that we are pretty private. Strange, I know, since I am a writer and share about my son and our journey with his autism diagnosis in blog posts and on social media. It is a balance of respecting the privacy of my family and sharing enough that I can hopefully help others know I see them and understand their struggles. I prefer to have people on social media that know me personally, and I share a bit more of my life with them as it is an easy way to stay in touch. Even then, I prefer to keep a lot of it private.
I thought, however, I would give you a small glimpse into our daily life and share a bit of what it looks like being a single mom of a special needs child. (Especially since things have gotten a bit more challenging for us.) At the time of this post, Emmett has received a diagnosis of silent aspiration. In short, when he drinks fluids or eats food that is not thick it goes into his lungs. When he gets sick, his asthma gets so out of control, and there is a strong possibility this is why. The solution at the moment has been to add a thickener to his cups. So, every evening I pre-make them for the next day.
Monday to Friday we have a pretty good routine.
The weekends, for the most part, are more go-with-the-flow, but they’re very similar to weekdays, with the exception of Sunday having more prep for Monday. Our wake up and bedtimes do not change much throughout the week.
In the morning, my alarm is set to go off at 5:00 a.m. We stumble down the stairs to the living room where I turn on Ms. Rachel and start fixing breakfast for everyone. During this time, I am bouncing between fixing his breakfast corn dogs, getting the animals fed, and making breakfast for his sister and me, as well as making my tea. I am constantly stopping to answer questions and play referee. When I do sit down, it’s for just a brief moment, and, many times, I have my breakfast standing up.
After breakfast I pack his lunch and snacks for the day, including his premade drinks. I make sure to always have a special written note in his lunchbox that includes words of affirmation and love for him. Then, I load everything up in the car and come inside to get both of the kids ready to go. It can sometimes be a battle getting Emmett ready for school. There are days that he simply refuses to cooperate, like some kids do. So, there will be begging, pleading, bribing to see a favorite teacher, or, even at times, bribes of Dunkin donuts. I give him his morning inhaler puffs, then we are ready to hit the road.
As you can see, from the time we get up to the time we leave in the morning, it is nonstop.
My friends and family know this driving time is one of the few times I can actually talk, so we play catch up with voice messages and phone calls. After close to an hour on the road I drop him off at his school, where he receives assistance for ABA therapy. I try to take a quick moment to go over anything needed for the day with his teacher, and that includes a behavioral update. When I am able, I also try to bring breakfast or a little treat for the staff. After this I am off doing whatever errand I need to and getting some exercise in.
Once I get home, I take care of my daughter. I do whatever chores or tasks need to get done. Sometimes, to be honest, I take a small break to just relax. Around 2:00 p.m. I start getting everything ready for bedtime and picking up Emmett. I am back on the road and then sitting in the pickup line. If I am early, I have time to write, catch up on emails and texts, or even read a few sentences of a book. When his afternoon teacher brings him out, I try to take a moment to ask how the day went and chat a bit before I get back on the road home.
When we get home we do dinner, and Emmett gets a cup with his nighttime medicine. Then we start our bedtime routine.
Sometimes there is a bit of a push back on this. Bath time is usually a literal battle. This is not uncommon with autistic children. Often I have to rotate using different strategies. Lately he’s been enjoying showers with the garden hose. This is one of those things that if it works you just roll with it. Some battles you will fight and some you choose to wave the white flag of surrender.
Bedtime is one of my favorite times. I carry my sleepy children up the stairs and tuck them in. We say our prayers, I sit in a recliner that has been in my family since the 1970s ,and then I rock my daughter to sleep. During that time, I catch up on reading and watching some shows on my phone. I do this for maybe an hour before I turn in as well. Bedtime is a time of quiet, peace, reflection, and relaxation.
My life is not easy, and there are a lot of days that are completely chaotic.
Sometimes we’ll have almost an entire week filled with specialist and doctor appointments. I honestly am not sure if I could do this without my mom. Usually, I can hold it together, but sometimes the frustration reaches a high. On those days I have to take a moment to complete the cycle by crying, then I move forward.
All in all, even on our hardest days I would not trade this life for anything in the world. I’m sure all you moms would agree. As always, keep up the good work! You’re doing amazing!
