Each New Day

BY KENDRA ROGERS, MS - EDITOR-IN-CHIEF

Every day I wake up and ask myself how will today go. I promise myself I won’t yell. I promise I will breathe. Inevitably, I’m sore and take extra time to get out of bed. I promise I will work out, but I don’t. I might do some stretching, but I am already sore, so more is difficult. I psych myself up for a day of training the puppy, running school work, disciplining the children, and preparing food. I am already looking forward to bedtime before the kids are even up. They trickle down and regale me with stories from their first ten minutes awake. They demand breakfast and complain when there aren’t eggs. Will asks what the plan is for the day. He must know what we’re doing every day. His brain can’t calm and focus on one task unless he knows what’s coming next. “It’s Tues, we’re doing school.” “Then what?” He asks predictably. I should know by now just to refer him to the schedule I painstakingly prepared so he wouldn’t have to ask. “I don’t know. We’ll see how school goes.”

“Mack, sit properly before you spill.” The first reminder of many. “You need to start school after you eat.” “Yeah, I know.” Then, he leaves the table and starts playing. “Mack, school.” “Oh, I forgot.”

Every school day starts the same way. I am mom, school facilitator, and counselor. Will has autism. Mack has ADHD. Kae is a toddler. Rory is almost a teenager. They are all gifted. People think gifted minds are easier to teach, but Einstein’s teachers disagreed and expelled him from school.

Daily, I face the immense challenge of ensuring my children learn how to interact with the world around them and learn the information our society requires them to. I have to source and implement academics in a way they understand and can interact with adequately. I have to practice social situations to teach them how society needs them to act. I sometimes feel I am asking them to be untrue to themselves in so doing.

his life, we would have been able to get a bigger jump on teaching him how the world works. Maybe if we had listened to the friends who asked if he had autism, we would have utilized early intervention. We didn’t. I didn’t want to face that something was wrong with my perfect son. I didn’t want to acknowledge his brain functioning differently. We are homeschoolers, so I thought I could just deal with him and his needs.

I already knew Mack had special needs. He has severe food allergies. I mourned for the loss of his innocence and perfection for years. I didn’t want to grieve Will’s too. Leigh and I finally decided to have Will evaluated. 140+ IQ and autism. We knew he was smart. When he finally talked at age four, he also read. We thought his eccentricities were just quirks. They are very much a part of who he is, but they also speak to how his brain works differently. We don’t want to change who Will is. He isn’t something broken to be fixed. He is him. Smart, quirky, thoughtful, loving.

I lamented his diagnosis, though. I knew how people with autism were treated. I knew society didn’t understand. I didn’t want my child seen as another kid with autism. I want him seen as the incredible person he is, but his meltdowns and awkwardness prevent people from getting to know him. He takes a long time to open up and let people in to his secret world. His world of love for others and exactness. He wants to end poverty and hairlessness while studying fossils in a secluded lab where he doesn’t have to talk to people.

Every day, I drag myself out of bed to be his mom. To be the person with whom he claims to have immense connection. Every time he tells a therapist he’s connected to me, I tear up. He doesn’t tell me, “I love you”. I don’t feel the connection. I feel the struggle to teach him how to compromise and make decisions and accept change. I feel his shut downs and melt downs when I put my foot down about chores and school. I feel the disappointment when I take away a coveted activity or change plans because life flipped up-side down. Every morning, I take another deep breath, count to ten, say a prayer and promise myself I will do better. I will do what my sons and daughter need me to do. I will show them the way. I will help them become productive adults. I will ensure they reach adulthood. I know Will is more likely to commit suicide by the time he is my age than his peers without autism. I know Mack could die today if I use the wrong knife on his sandwich. I know Rory is experiencing an identity crisis while he learns who he is and what he wants from life. I know I need to teach Kae when to dissent and when to obey. These are insurmountable tasks.

I fail daily. I succeed daily. Every night, I tuck my gorgeous children into bed and settle into the couch with Leigh. Maybe that day was easier. Maybe it was harder. None of the kids went to the emergency room or died. We are all together.

When I do muster up the strength to exercise in the morning, I do better throughout my day. I remember to breathe and count instead of yell. I remember they are children who need me to guide them not chastise them. I remember they are looking to me for comfort the way I find comfort in prayer. If I pray through my challenges, I find strength. Strength to continue raising these inspiring children I created. Strength to say no. Or yes. I lean on Leigh for support and text my best friends long vents about life. Then, I go make dinner. And listen to Will complain about dinner. He is a picky eater…sensory struggles due to autism.

I still grieve the loss of ice cream parlors in the summer because of allergies and the loss of freely picking up and going places because of anxiety. I have learned a new normal, though. Our new normal is making ice cream at home and laughing at our own table. We can still go places, but we have to plan ahead. We have to give ample time for Will to choose books and for me to pack safe food. We save money by not eating out…silver lining. I have to have the itinerary pre-planned and tell Will about each new thing. If we are repeating an old favorite, I don’t have to prepare him, but I do have to make sure he knows we might not get to every inch of the museum. We make sure to do a favorite exhibit of his early in our visit. We have to warn him about new experiences and be ready to shield his eyes and ears or escort him from a concerning room.

Preparedness is key, but even with that, we still end up defeated. If the exhibit Will wanted was closed or we ran out of time, he melts down. We can’t reach him during a meltdown, and they eat at our time. We struggle to give him the time he needs and help him rebound when he’s ready. Heaven forbid the rest of us want to do anything Will doesn’t want to do. Or we plan a less favorite outing when he had plans to stay home and play LEGOs all day. He has to learn he doesn’t dictate the family’s outings, though. And Leigh and I are the ones who have to force him to do things he doesn’t want to do. We hate forcing. We hate doing things our kids don’t like. We want their smiles and laughter. Not their tears of frustration.

Parenting is a mixed bag of laughter and weeping. Parenting special needs kids shakes up the bag and adds more uncertainty than either laughter or crying. We might even cry more than the kids.

I always knew the biggest challenge I would face as a mother would be to raise kids who were equipped to leave me. Not because I thought I would struggle to equip them, but because I wouldn’t want them to leave me. Now, I know the equipping is equally as difficult as the inevitability of them leaving the safe haven of my arms. I have to teach a child to be in a society that confuses him and that he confuses. I have to teach a child how to survive in a world that values food over human life. I have to raise a daughter to be who she is in a culture that wants her to be submissive. Eventually, I have to trust they have learned enough and I can let them go. And I have to live long enough to set them free and know they can do life without me coaching them.

Parenting is a challenge for everyone who embarks on the journey. Special needs parenting ups the ante and the reward. When I see Will engage with a new person and eloquently talk about himself, I know I am doing okay. When I see Mack explain his allergies and advocate for a safe space, I know I am preparing him for life. When I see Rory stand up against church leaders for those who are different, I beam with pride about the strong child I am raising. When I see Kae confidently tell a horse what to do, I laugh tears of joy that she will be able to withstand the storms of life. My challenges are my children, but they are my rest too. They are my inspiration to continue facing them.