Before I was a special needs mom I was just a mom. I was excited about everything I thought motherhood would be. I planned out the nursery and read all the baby books. I brought my child home and spent my days dreaming about the life ahead until the day it all changed. For some, it’s in the beginning when you’re going to all the evaluation appointments and for others, it’s the day of their diagnosis. I’m not entirely sure when it changed for me, all I knew was one day I looked at my life and didn’t recognize it anymore. Just like in the poem “Welcome To Holland,” there I found myself and there I must stay while watching everyone else come and go from where I thought I would be. There are moments in almost every day that I want to shout that I’m just a regular mom, too, but most of the time I catch myself thinking of saying that during my two and a half hours in the car every day driving to and from a special needs school or therapy appointments that consume every single afternoon of the week.
I always want to do play dates, but most of the time I’m tied up at therapy appointments or doctor appointments. I love chatting on the phone or texting, but either my son has it playing a game while I’m trying to get some shopping done because that is the only thing that calms him down or I’m in a frenzy of emails and phone calls working on IEP meeting strategies or insurance coverage. I relish talking about the new things our kids are doing, but sometimes I feel isolated because those things look very different for my child than others. And what a bag of mixed signals when I appreciate the accommodations others offer for my son, but sometimes it gets exhausting feeling like you have to come with an instruction manual. So, on the one hand, I’m just a mom wanting other mom friends to hang out with and talk with, but on the other hand, I have very different needs that are sometimes hard to understand, and sometimes I don’t even know what they are until I realize them. It takes a special kind of person to be the friend of a special needs parent.
Since we are in April, which is Autism Awareness Month, I thought writing about my day, hour by hour, would give the best glimpse into what its like to be a special needs parent so others can see. Here it goes … a day in the life of an Autism mom:
– 3:36 am: Wake up to child chirping like a bird in bed. Sometimes this means poop. Go in to check diaper.
– 3:42 am: Only some tiny pebbles, but glad I went in. You never know if those are gonna stay in that diaper, and we don’t want what comes after that.
– 4 am: I smell poop. Is it him again? I feel like there are hints of lemon, which is from my soap so it’s probably just my hands.
– 4:20 am: Back to sleep.
– 6:25 am: Wake up to child singing. Put pillow over ears and hope for 10 more minutes of sleep.
– 6:45 am: Alarm beeps. Drag myself out of bed, throw sweatshirt and jeans on. Come downstairs and grab a cup of coffee.
– 7 am: Separate fighting children.
– 7:10 am: Try to coerce child into car to go to school, but he wants to stay and watch TV with his brother. Tantrum.
– 7:15 am: Turn car TV on and finally get him in the car and on the road. We leave this early because we drive 30 minutes to a specialized school for individuals with Autism. Options are very limited for schools if you don’t wish to or your child doesn’t thrive in a public school program.
– 7:20 am: Jeep driving in front of me flips over after swerving to avoid another car simultaneously being hit by said car. Throw my car in park and put hazards on. Jump out of car to help.
– 7:28 am: After pulling poor teenager out of flipped car, he was fine other than a cut finger and being scared out of his mind. We sit together waiting on paramedics. My child sits in my car not giving a rats ass where I am while laughing at whatever Mickey Mouse episode he was watching. In this moment, I am super grateful to have my child with Autism with me because if I had had my neurotypical child with me, he would have been terrified and crying for sure. Ironically, this great example is given to me on the very day I’m writing this post. (Side note: Paramedics were very nice eye candy that I couldn’t fully appreciate since it was early and I hadn’t even brushed my teeth yet.)
– 7:35 am: Back on the road. I do not need the coffee I brought with me after that.
– 7:53 am: Still made it in time for car line! Woohoo!
– 7:54 am: Call and leave messages for doctor appointments to get new treatments set up.
– 8:20 am: Back home to shower and get ready for the day.
– 9:30 am: Go to husband’s office (chiropractor) to get ankle checked out the sprain from my wonder woman stunts diving on the ground to help car accident victim.
– 10 am: Retail therapy and grocery store. Call to discuss IEP strategies with hired advocate while shopping. Need shopping even more now.
– 12 pm: Lunch date with the hubby. Today we go to Ocean Prime and sit outside. Momentary bliss … ahhhh.
– 1:30 pm: Back on the road to pick up kids. He sings to self “On The Road Again” for the 492nd time this year.
– 3 pm: Swim Lessons. Hot, sweaty swim lessons where my little one always insists on pooping when we get there. So. Much. Poop. When you’re a parent.
– 3:45 pm: Back home for a snack.
– 4 pm: Occupational therapy. Hang with little one while my older one does therapy. I am fairly positive I enjoy this more than he does.
– 4:45 pm: Referee (I mean play) with the kids. My son with Autism loves to take your face in his hands and make noises nose to nose. He is also a sensory seeker so there’s lots of running into me and jumping on me. It’s physically exhausting most of the time.
– 5:15 pm: Retreat to the kitchen to drink wine and cook dinner.
– 5:17 pm: Put both kids in time-out for beating on each other. Why is it this all kids know when you can’t attend to them and they act like caged animals?!
– 5:20 pm: Explain for the 172nd time today they must keep their hands to themselves.
– 5:21 pm: Repeats last 2 entries. Pours more wine.
– 5:45 pm: Timer goes off to turn off iPads. This is always a struggle. Tantrum ensues.
– 6:10 pm: Husband comes home.
– 6:15 pm: Sit down to eat dinner. Inevitably one child will not eat whatever I made. My oldest who has Autism insists on jumping up and down while standing next to the table and my little one asks 15 times when he can go back to the playroom to watch Mickey.
– 6:45 pm: Time for a bath. Transitions, even to a preferred activity, are often tough for individuals with Autism. My son is no exception. Lots of screaming and crying.
– 6:50 pm: Come in from taking the dog out to hear screaming. Husband gives the kids a bath and they fight every day for the most part that one is touching the other. This is normal sibling behavior right?!
– 7:15 pm: Massage and bedtime stories. Massage helps my older one with sensory input so he can relax right before bed.
– 7:30 pm: Lights out. Lots of chirping from my older one.
– 8 pm: He usually falls asleep right about now.
– 8:15 pm: Follow up with emails from today. I will probably dream of IEP and doctor intake forms.
– 9 pm: Head upstairs to shower. So. Tired.
– 9:30 pm: Try to read something, but can’t keep eyes open. Sleep.
All in all, the typical day for An Autism parent might not look that different from anyone else with kids, but it is very different. Within those minutes in between the main events comes the attempt to stay 50 steps ahead of what could end in disaster. In ABA (applied behavioral analysis – the preferred therapy for individuals with Autism) they call this “antecedent strategy.” It takes a lot of mental and emotional energy to constantly have that guard up and also to navigate the behaviors of Autism in general. It’s a fight or flight adrenaline rush 24 hours a day. This day doesn’t include any public shaming scenarios either, which happen regularly, nor does it include any bodily function incidents. This was an example of a good day. There was a time when I felt like being an Autism mom was the opposite of a neurotypical mom in the sense that you might have moments of crap in your day but for me there was only moments of good. It’s gotten a ton better with all the therapy and school, but being a special needs parent comes with very special challenges.
I hope this sheds a little light into the world of a Special Needs Parent. I’m still just a mom, wanting other moms to like her.