“You’re 5 minutes late again, Jen. Is everything alright?” my former boss questioned me…again. I wanted to be honest. I wanted to tell the truth, but the truth was that my son’s autism wasn’t going to go away, I still had to keep this job, and it wasn’t my boss’s problem. It wasn’t something someone who isn’t the parent of a child with special needs will ever understand on any level anyway. I’m sure my boss assumed I was just having trouble with “time management” or taking too much time getting a latte (which I couldn’t even afford) when the truth was and is that I have trouble with “life management.” If I didn’t HAVE to work to keep a stable home, the lights on, the water running, food in the pantry, clothes on my kids backs and shoes on their feet, I wouldn’t. I would have taken at least a season off. I would have at the very least taken the season off from work when I had a newborn and was driving 2 hours to Atlanta for testing and therapies for my 3-year-old son who was being diagnosed with autism.
This was the season when my heart was breaking and I would collapse in tears on my pillow every night after completing yet another 10 pages of paperwork fighting to get him the early intervention services that I was told would make or break his future functioning (no pressure or anything lol) that I couldn’t afford on my own. It was the season when I kept my make-up bag in the car so that I could put my make-up on when I pulled into the parking lot at work so that no one would notice (hopefully) my red, puffy eyes from crying on the drive into work when my son had yet another meltdown when I had to drop him off at his special-needs preschool. Thank God we even have a special needs preschool in my town so that I could put him in daycare. He couldn’t function at a typical daycare center. It was the season of covering up his claw marks on my arms with long sweaters some weeks. It was the season where he gave my mom a black eye from flailing around during a meltdown. It was the season when I was not only working, but trying to finish my Master’s degree so that I would be able to work part-time and actually make a living wage. I knew working full-time would never work for me and my son’s needs. Someone has to take him to therapy appts twice per week, he cannot stay in a typical after school care program (he can barely hold it together behaviorally during the school day), and I knew that I would not be able to have the patience and energy to deal with his challenges if I was drained from a 40+ hr work week. So, I worked 30 hrs per week while I attended graduate school full-time. It nearly killed me. I wasn’t the best, most patient mom during this time. But this was the only way I saw to make it to a sustainable lifestyle. I did survive by the grace of God and threw myself over that finish line, walked the stage and got my Master’s in Clinical Counseling Psychology. I collapsed in bed with a migraine that lasted for a month after graduating. Thank God I had enough money from student loans to take one month off to try and heal my body and mind.
Thank God, after an exhaustive job search, I was offered the first job that didn’t require a long commute giving community awareness presentations and working with women and children who have experienced trauma in my town. I am still there today because I find my work fulfilling, but also because it is a family-friendly workplace where I get some limited benefits and a stable, predictable salary. I feel like my bosses care about me and I could tell them if I needed to take time off for my son. I make a decent enough living and work outside the home only 20 hrs per week. I supplement my income teaching online college classes here and there. It’s not enough to have a savings account, take vacations, or feel “set,” but I know I won’t be in danger of being homeless or unable to meet my children’s basic needs.
I often felt like if I could just be a stay-at-home mom, then maybe I wouldn’t feel like a basket case all the time. There is nothing worse that having people look at you with that, “is she alright?” look at work. No, I’m not alright. I struggle every single day. My child requires more from me than typical children do. He has had sleep issues (thank God finally resolved with natural supplements, but he didn’t sleep through the night for 6 years), he requires a strict routine and I can’t just make him run to the grocery store with me because I forgot the ketchup and he’s demanding ketchup. I have to keep him on an even keel by making sure he has time for relaxation, to sit on the potty at the scheduled time, to go to his therapy appointments. He requires so much love and patience. He has taught me so much love and patience. Did I mention I also have another child 2.5 years younger than him? I have to deal with the challenges of a sibling who is frustrated with his brother’s special needs. I mediate fights and try to understand both their viewpoints. Putting on my game face for work and acting “put together” and “professional” isn’t easy. I don’t have time to accessorize or do my hair, so its usually in a messy bun. I could be having an full on panic attack and you wouldn’t even notice because I have trained my mind and body to just sit there and ride it out, knowing it will end at some point. Anxiety is a liar I don’t have time to listen to. I used to feel like a big, fat phony. Now, just feel strong. I survive my challenges and my life everyday.
I’m a warrior, I soldier on for my son every day. I don’t completely unload my whole story and all my struggles on my co-workers, but I’m honest enough about the fact that I have struggles and I know what its like to be past your breaking point and still soldiering on because that’s what we good mamas do for our kids. I think that makes me a better counselor, especially for other parents who have special needs children or have trouble finding ways to balance all of the demands of life. It doesn’t make it easy. I invest some money each month on self-care so that I don’t end up in the mental ward or dead from a heart attack. I have to take care of myself or where will that leave my kids? Without a functional mama. So, I do yoga, I pray, I listen to music, I journal, I get acupuncture when I can afford it, I get cheap massages from the local massage school, I garden and run around with my kids in the yard. I thank God I have a home and a yard.
Sometimes, now I think that working has been good for me. Not having the option to stay home means that I have always had to pull my $#@# together every day, even if I don’t think I can or I don’t want to. I don’t have the option to sink into alcoholism, addictions, self-pity or depression. I have to “just keep swimming, just keep swimming” and that keeps me from sinking down deep. I can’t sink or my kids will sink with me and they don’t deserve that. They deserve my all, my best. I refuse to fail them as long as there is breath in my lungs and my hands are able to work. Work demands my all, my best as well. So I have to find ways to be my best me, to cope effectively. Yes, my ultimate daydream is to be a kept woman, but knowing that is about as unlikely as a winning lotto ticket, I just keep going. I cry, I scream and pound the steering wheel of my car when I’m alone in the car sometimes, I call my mom or my best friend and get out my “its not fair, this sucks” moments. I listen to songs that make me feel like God has me and I’m strong like:
You might be thinking I’m a single mom as you read this. I’m not. Times are just tough and they always have been. My husband has always tried his best, but he has had some tough stuff to deal with too, like lay-offs and being unable to finish school due to caring for his sick father and trying to support their family when he was only 19. Now, he has health issues himself. He works hard, but without a college degree or hulk-like physical strength to do manual labor in a 105 degree factory all day, he has never been able to fully take care of our family’s financial needs by himself. I know it breaks his heart and his pride watching me struggle. We live frugally. We have a tiny house, used cars, thrift store clothes, discount shoes. We are not snobs, but I refuse to live in the projects where I can’t sleep in peace at night. I need a car to get my son to his appts. My son requires a lot of vitamin and mineral supplements to help his behavior, sleep, and stomach issues. My son’s therapies require co-pays. I have had to buy things to help him learn and communicate better like an iPad. There are so many extra costs that come with his needs. It is what it is. But he is worth it. And I will do my best. Thankfully we have extended family support if the car breaks down or the pipes burst. That support for emergency needs is more than many struggling families have.
This is my life. It is raw and honest. I would be lying if I said I didn’t ask God, “why?” sometimes. But usually the still small voice in my heart just reminds me that I am strong and I can learn. If God only gives us what we can handle, apparently I’m just a bad-ass.
But on a serious note, I give thanks that all of my prayers for my son have been answered. I have prayed over him every single night with tears flowing. He is thriving in spite of his challenges. He speaks (not only speaks, but articulately and with a beautiful vocabulary) and he has not had a meltdown in 3-4 years. He has friends, loving teachers, an accepting church family, and kind therapists. He finally started sleeping well and using the potty. He still needs peace and calm in his daily life. He still can’t go to the after school program, but that’s ok. We are making it. He is making it. Living on the love of God and family, we just keep winging it. Giving up is not an option. We will wing it together.