by Brittany Reiger
Thump. Thump. Thump.
I wake from the thumping of the dog’s tail at the end of our bed. I turn to look at the clock. 1:47 am. I roll over and listen.
Thud. Thud. Thud. Thud.
Here she comes. I sigh and get out of bed to see my 5 year old running down the hallway, with all three of her comforters.
“Benelli, let’s go to the couch”.
We do this about 4 nights out of the week so she knows the drill. We both climb onto the couch which is nowhere near big enough for the two of us. I lay there looking out my big sliding door wondering how long it will take her to fall back asleep tonight, cursing the Melatonin gods for not working longer. She wiggles her body all over the couch, squealing, getting the sensory input she so loves and craves. I drift off. I wake a few minutes later to her trying to get up.
“Benelli, go to sleep.”
She hops back on the couch & continues wiggling & speaking in her own ‘Benelli language’. This back and forth of me drifting off to sleep and her trying to get up to dance around continues until I hear my husband’s alarm go off at 5 a.m. I am always so relieved to hear that sound, unlike most people. I get up and ask him to relieve me until he leaves for work so I myself can get a little more sleep until I have to start my busy day. I fall asleep.
6 a.m. he wakes me and I begrudgingly drag myself out of bed. Benelli is finally asleep on the couch.
“When did she fall asleep?”
“5:30”
He has made my pot of coffee already that I will drink all of before I leave for the day at 8:30. This hour between me waking & the other two rising in an hour is the quietest time of my day. I savor it. I make each lunch for the day. Mine, Benelli’s, Adeline’s, & Gunner’s. Each child has their own food preference and so I make three separate lunches containing completely different foods. Benelli, mac n cheese and yogurt. Adeline, pop tarts and cereal. Gunner, peanut butter sandwich and fruit snacks.
Benelli wakes. She comes into the kitchen and says, “muuulk” (milk). I grab her bottle and fill it with her 1 mg of Prozac and her milk. The Prozac has been her godsend. She was such an angry, violent, lost child before it. I make sure to start everyday with it, to make her brain happy. She runs squealing to the couch to calm herself with her favorite comfort, her bottle.
I hear Adeline in the back. I walk down the hall wondering how she is going to bolt out of that room. Adeline is either the happiest little human or a raging little tornado. I open the door. This morning, she is smiling. She walks down the hall scripting Wonder Pets. When she sees her sister has a bottle she starts. She comes up yanking my hand, but she can’t think straight on where to take me so she drops to the ground and starts kicking me, hard. I have to think every time what of the million things it could possibly be to set her off. I am usually pretty good at knowing. I grab her a bottle as well and begin to fill it. When I hand it to her she is happy again. I load up their backpacks for the day.
I have to wait 5 minutes before I know the bus will be there to dress them. They do not understand the concept of wait and if they are dressed and the bus is not there it will result in an instant meltdown that has the potential to throw off their entire day.
7:45. I dress Adeline. Adeline does not know how to dress herself so I dress her. She is just figuring out to give me an arm and a leg for me to put the clothes on. I go to brush her hair which is a sensory nightmare to her. I have become skilled at my ninja like reflexes to brush her beautiful long blonde hair.
7:50. I put Adeline on the bus to her Autistic Support Preschool through the IU. I kiss her and tell her I love her as she continues to look out the window.
8:00. I dress Benelli. Benelli is getting better at helping me dress her. She tries her best, but usually stuff is in the wrong hole and she gets frustrated, so I help guide her.
8:10. I put Benelli in her van to go to her Autistic Support Preschool at Easter Seals. I kiss her and tell her I love her. Sometimes, she will say, “I luuuub yyyyoou”. Sometimes, she happily waves her head back and forth squealing, excited to start her day.
I go inside and wake Gunner. At least one of my kids likes to sleep. I dress him for his day, which is usually about the equivalent to wrestling a slippery alligator. He thinks this is funny. I grab all of our things and we go to the van. I take Gunner to our neighbor’s house who babysits him. I drop him off and every single time I leave I think how grateful I am to have someone I know watching him who accepts him for his learning differences and his limited speech.
I go to work.
Work is my place of mediation. Although, I rarely have the ability to go, between doctor’s appointments & meetings, the random few hours a week I get to are my recharge.
*Ring, Ring*
Doctor’s office
Work.
*Ring, Ring*
BSC
Work.
*Ring, Ring*
Speech Therapist
Work.
*Ring, Ring*
Teacher
Work.
…and just like that it is time to leave. I have a meeting to attend at school. Sometimes I feel like I have spent my entire Motherhood in a meeting.
Meetings. They always last so long. I have some of the most amazing staff for my children. I have been very blessed in that sense. The majority of the time though, I am overly exhausted. So, after about an hour I have to try really hard to pay attention. Honestly, most of the time I begin zoning out and I feel like Charlie Brown listening to his teacher. I sit in these meetings knowing I probably look like I staring lifelessly at everyone. I wonder if they know I try so hard for my children. I wonder if they know I am not trying to look uncaring, my brain is just friend. I hope they know I spend every waking second of my life trying to improve their lives and that if I tune out during a meeting, it is not intentional by any means.
The meeting is over.
I head home to make sure I get Gunner in time so that we can be home to get the girls’ off their buses.
Gunner greets me with a big smile.
Smiles keep me going.
We get home to get the girls off their buses at 3:20 pm.
Benelli says, “muuuulk”. So, again I get her a bottle and give her milk.
Gunner starts yelling at hitting my leg. I try asking him what he wanted, but his day most have been tiring so the words are missing the connection. I ask him if he wants milk & he continues hitting me, yelling. I give him a bottle and he happily runs to the living room.
Adeline gets home. This is one of the tough parts of my days. The majority of the time she comes home in a complete meltdown rage.
I take her out of her car seat and she runs into the house…. screaming. She is on the ground screaming & I try offering her any of her comfort items, but nothing is working. She flops around the house following me, using me as her punching bag, kicking. This can go on for 10 minutes to an hour. Finally, she calms enough to take the bottle and runs to her tent bed to calm herself more. The next two hours I walk on eggshells with her. School takes everything out of her and she can not cope.
Benelli, “eeeeaaaaat”.
I start cooking, mac n’ cheese.
Gunner comes up to me.. “I C” which means fruit snack. I have no clue where he got the I C from, but every time I give him a snack I reiterate “snack”.
I realize it’s been 10 minutes since I have last seen Benelli. I panic and wonder if I made sure to double lock all the doors. Making sure everything in the house is locked & double locked with 2 elopers is crucial. Yes, I did. So, I begin searching the house. I open the bathroom. I forgot to shut off the water under the sink, so Benelli has once again flooded out the bathroom, as well as smear toothpaste all over the walls, and poop. I close my eyes. I breathe.
“Benelli, go play.”
I clean up the bathroom.
She will try to sneak in to do this another 10 times tonight.
Mac n Cheese is ready.
“Benelli, Adeline Gunner.. EAT”
They all run to the table. Benelli eats with a spoon, Gunner is hit or miss, but Adeline will only eat with her fingers. Gunner eats 2 bites and runs away to the living room. Benelli begins making cheese art on my sliding glass door next to her seat. “Benelli, eat”. She wiggles around in her seat squealing, happily. We have to remind her at least 20 times during dinner to please sit. She is always on the move. Adeline takes the longest to eat. She eats one noodle at a time. Benelli tells me “All Done”. She gets up to go play. Adeline then quietly gets up to go play.
My husband gets home around this time and we eat our own dinner while getting up a few dozen times to pull the kids off the entertainment center, a dresser, or a table. Our meals are cold before we finish.
After dinner is my favorite part of the day. I read books with Gunner & just sit. The girls do not like us to join them in play so we sit with them and when they want our affection or a touch they come to us and sit in our lap or grab our face. There are only words spoken by my husband and I, but we have a non verbal language with the kids that we all know. Adeline prompts me to sing by grabbing my mouth. Benelli places my hand on her back for a back rub. Gunner comes and relaxes his little body in my lap for snuggles. It makes the hardships of the day worth it.
7:45. Bath time. All three kids go into the tub and it is sensory water play wonderland. There is water covering the walls and the ceiling, and of course myself, by the time we are finished. After I dry them all off and send them out of the bathroom, I spend 10 minutes drying the walls and floors.
I make their bottles for bed. Benelli gets concoction of Melatonin and milk. Adeline gets a concoction of Melatonin, Miralax, and milk. Gunner just gets milk.
“Give Daddy a kiss”. Finally, after 5 years everyone in the past month runs to Daddy and kisses him. It took so much work. Years of this every single night and finally they all do it. It is moments like this that we feel immense joy from all the hard work. While the other two are silent for this, Benelli says, “Daddy, I LUUUB YOUUU”.
They all grab their bottles and run to their rooms.
I kiss Gunner good night, tuck him in, and close the door.
I go to the girls’ room. I kiss them goodnight, tuck them in, close the door, and sit on the floor in the darkness. As my eyes close due to the sheer weight, I have to tell Benelli a few dozen times to “Go to bed”, and she hops back in. I sit there with my eyes closed, mentally and physically drained. My body hurts. My soul is tired. Every day I wonder how I got through it all. Every day I pray for a little more independence in my kids so I do not have to do every single thing for them. Every day I feel like I cannot do it again, there’s no way, my body is going to give out. But every night as my eyes are closed, I sit there smiling, because I know that I did my best and those three little souls who take up every ounce of my heart are depending on me.
I go to bed & I pray for a full night’s sleep. I pray that I have a better day tomorrow.
Easterseals of Southeastern Pennsylvania 