Today I thought I would share a typical day in my life as a parent of a special needs child. Although my day can vary, for the most part these are the everyday activities and occurrences that can happen. To say that there is never a dull moment, is an understatement.
Generally, Michael has been a much better sleeper as I wrote about a few months ago. So, unless he needs to use the bathroom, he typically doesn’t wake up during the night.
5:00-6:00 AM: Every morning, Michael will come in our bedroom to hand me my glasses and my slippers letting me know he’s ready to get up. When he first started to do that I was really impressed. Our first stop is the bathroom. Michael wears a nighttime pull up as a precaution but really hasn’t had overnight accidents in a long time. There was a time about a year ago, when he didn’t need to use them at all. Unfortunately, regression in autism is common. However, I am happy to report the last five nights in a row, he hasn’t needed the pull up. I’m hoping maybe this is a turning point in being able to hold it as he sleeps.
6:00-7:00 AM: Michael’s breakfast. His brother Alex usually wakes up (on a good day) at 7. There are some mornings where Michael will sit at the table eating his breakfast while watching a Disney video on his iPad. Then there are the mornings I spend redirecting him back to the table with trails of food following behind him. I can’t even tell you how many times a day I must sweep. This redirecting him back to the table can go on for quite a while or until I’ve had enough, and breakfast is over. My mornings with Michael are hands-on with no room for anything other than concentrating on getting him ready.
7:00-8:00 AM: After breakfast I get him dressed and ready to wait for the school bus. I normally leave his shoes for last as he will continually remove them until the moment he leaves. While we wait for the bus, I will spend most of my time trying to have him engage in an activity rather than become involved in something he shouldn’t be doing. If I turn my back for one minute, there are many things he can get into. There are times when Michael will walk away, run into the bathroom, play with the liquid soap dispenser, stick his hands in the toilet, or even turn on the shower. I must be on top of him every second. My dad is here most mornings, so we are usually playing tag team, keeping him in the living room waiting for the bus to arrive.
Michael starts school at 8:30, and his bus is usually here to pick him up by 8:00 AM. I work from home from 9:30 to 3:00, perfect hours for me for being here for my boys after school. Once Michael gets on the bus, I can breathe a sigh of relief, at least for a few hours. Once Michael is on the bus, I can then continue to get Alex ready to go. After Alex is off to school (my dad will drive him there and pick him up at least 2-3 days during the week), I have about a good hour to do any chores, make phone calls, and take a shower before I start my job.
3:45 PM: Michael gets out of school at 3:20 and the bus will drop him off by 3:40, 3:45 the latest. Our home ABA therapy start time varies by the day. The days the therapist doesn’t arrive until 4:15 are the hardest for me. Usually both boys are getting home at approximately the same time. Alex is self-sufficient but for Michael, we must stay on routine. In other words, first thing I do is have Michael take off his jacket, put his backpack on the table, take out his lunch box, and then head to the bathroom. There are days Michael comes in like a tornado and it’s difficult to get him to follow directions. Again, depending on the arrival time of his therapist, I usually try to get him to sit at the table, choose a snack, watch a video on his iPad, and wait until she arrives. Once the therapist arrives, I can tend to Alex, start dinner and work with the therapist on programs Michael is learning. I try to get everything completed for dinner before she leaves. Once she is out the door, I am not able to do much of anything.
5:30 PM: After the therapist has left, I have about an hour and a half until he is ready for bed. During that time, I usually give him a shower, if he hasn’t had one by then. I also sit down to eat dinner with my dad and Alex. My husband has about an hour and half, sometimes two-hour commute home, so he has dinner when he gets here.
While we are trying to have dinner, Michael is given his iPad to watch some Disney videos, do some puzzles or watch something on TV (which sometimes he will not sit down long enough to watch). So, with that said, it’s either me or my dad who will jump up from eating our dinner, as we can hear Michael turn on the shower, playing in the bathroom, or jumping from his trampoline to the couch to the window seat. We do not lock the bathroom doors because I want him to be able to get in there to use the bathroom if he needs to without any issues. For the most part, he can go to the bathroom on his own, however, he does require assistance with putting his clothes back on.
Michael has a thing for cords, although most of our cords are hidden, if he finds one, you can be sure he is going for it, taking down whatever it is attached to. Right now, we have secured our lamp cords to the end tables with a zip tag. It seems to be working. If you leave your cell phone plugged in an area where he can reach it, you can kiss it goodbye, as he loves to yank it out of the outlet. These are all behaviors we are working on and consistently redirecting. One of his ongoing programs is working on leisure activities so when I’m not able to tend to him, he is able to learn to wait and do an activity on his own. This can continue to happen over and over until one of us has finished dinner and able to sit and do an activity with him.
We do use medication to help with Michael’s behaviors and sleep.
6:00 PM: He is getting his first medication of the evening. An hour later is his final one for the day.
7:30–8:00 PM: Bedtime. By this time, I am beyond tired. However, my day is not over. I still must make sure Alex has completed his homework, taken a shower, and is getting ready for bed (and that is a story for another day).
Parenting & ASD
It’s exhausting and a great deal of work taking care of children but taking care of a child with autism raises the level of exhaustion. It’s difficult to understand unless you have a special needs child. There are so many things thrown at me all day and the stress and pressure of just trying to get through the day is overwhelming. Every day. The constant worrying that I’m doing the right thing, I’m spending my time equally between Michael and Alex as well as my husband is enough to drive me crazy. I don’t know if it will get better. My hope is either I figure out how to deal with everything better, or with time and continuous therapy, it will be easier. Either way, this is our life and I want to make sure it’s a happy one for all of us.
I recently read that research shows the daily life of a parent who has a child with ASD lives with twice the amount of fatigue compared to parents of children living with other disabilities, and 20 times greater of parents with children without a disability. I’m not even going to question that, I’m pretty sure I’m living proof of that right now.
Living with autism daily means, there can be good days and bad days. Regardless, I just keep going, moving forward and hope for the best. There are some days, autism can clearly kick my butt, and I just don’t win. I do the best I can to make sure Michael is getting what he needs and the rest of my family as well. I wanted to share this because I know it’s hard to understand without experiencing it first hand, and if breaking down a typical day of living as a special needs parent, more specifically as a special needs mom, I hope you get a better idea of how much there is to deal with. I’m not looking for sympathy or pity, I just want to emphasize the need for compassion, acceptance and awareness.