No one has ever accused me of being without words. In 34 years, I’ve just about always known what to say. When you live in the south (I’m a transplant), women talk…a lot. In the south, being a mama is a prized part of life. One’s glitter monogram soccer mom shirt must be crisp, the pot luck meal for church should be Pinterest-perfect, your lips are sealed as the husbands talk (because you will just chat about it later with your girlfriends over sweet tea and “bless his hearts”), and your smile should be polished as your children gleefully race circles around your legging-dawned calves. Yeah. Even if I wasn’t from the north, I still wouldn’t fit in. So this is my coming out.
I’m a Christian, but sometimes life makes me want to say curse words. I am a wife, but sometimes my husband and I have to take a “time out” before we impale each other with harsh words. I am a teacher, but many days my REAL life is so overwhelming that focusing on my overworked and under-appreciated teacher self and investing in someone else’s kids just feels more like an out of body experience. And, I am a mama, but my children aren’t sunshine and unicorns. I am the mama of a five month old baby girl and a five year old boy with invisible disabilities. Each and every day with him renders me speechless. So, no, I’m not glittery and picture-perfect. My leggings are covered in spit up and mine is the kid who is screaming and proudly announcing to everyone at his first soccer practice that he, “just farted!!”.
This blog is meant to document what is shaping up to be our looooooooonnnnnnggg and winding journey parenting a child with special needs. These posts are painfully vulnerable, but they are meant to accomplish two goals: 1. Help me cope with what many days feels like living in my own personal prison, and 2. Hopefully reach, help, and connect other mamas (and dads, grandmas, friends, teachers…) like me who feel the paralyzing isolation of parenting an extreme child.
I pray our story can help educate those who’ve never experienced our type of child so we can parent together in love, rather than constant rejection; so we can teach the public to judge less and smile more.
Some days are filled with endless disappointments, riddled with paralyzing fear and anxiety. Some days overflow with laughter…sometimes in a simple effort to save our sanity. Some days we spend hours on the phone stalking doctors and specialists to try and get answers for our child, or in doctor offices with evaluations, medication follow ups, and child studies, only to be taken back to square one.
Most days swell with pride, even if only for a moment. All days supply no less than one opportunity for someone outside our circle of safety (our VERY small, even minute trusted circle) to understand us; to join, support, and encourage us in our journey. More often than not, people choose to stare, to pass judgment, and to make decisions about our parenting skills or what is best for our children. No one ever asks questions. They simply stare, jaws ajar, as a meltdown ensues. It is amazing just how alone you can feel in a room full of people who are all blindingly aware of your presence.
The blonde-headed, dimple-faced, blue-eyed, sickeningly adorable boy standing beside me when we walk into a store was more than likely punching me, spitting at me, throwing things, yelling uncontrollably at my husband, and kicking the seats in my car just minutes before. Don’t worry. You might get to see it firsthand as his meltdowns have graduated to public occasions.
I feel like I need a T-shirt that says, “Go ahead, call CPS. I’m not a bad parent. My kid may look ‘normal’ but he has disabilities and I am doing the best that I can.”
THIS is my coming out.
Through the last three and a half years I have tirelessly researched, read, studied, combed through endless pages of medical journals, articles, and books only to find the same ending: I. Am. Alone…until recently. After reaching out to friends and simply by being mind-numbingly honest, I have found that I am not all by myself in this parenting pit. Quite the opposite, actually. There are a lot of us, flopping and floundering and grasping at any remnant of a new idea to try out with our “difficult children”. We are hiding behind missed nap time excuses, skipping play dates and birthday parties and church services for fear that our “strong-willed child” might choose to assert themselves in front of a captivated audience.
As we share our take on great books that made us feel less crazy like, The Explosive Child and Simplicity Parenting, it becomes apparent that I am not the only one.
I’m done being quiet. I am done hiding. I am coming out. I am not the only one and if I have learned one thing it is that I absolutely, undeniably cannot do this alone. We need each other. So keep reading. You might get kicked. Your hair might be pulled. You most definitely will get yelled at, but in the end, you will laugh, cry, and know without any doubt that you too are not alone. I am taking my voice back. I’m coming out. I am the PROUD mama of a child with invisible disabilities and this is my journey…
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When do you decide that the behavior of your child is more than just a phase? My daughter is almost six she makes random noises sometimes, doesn’t transition well with change, gets nervous whenever she isn’t sure about something. For example crossing the bridge on a playset at a park. She sometimes will start crying,and seem scared. She’s been ovaluated by OT,but no one else. They said, that she has some sensory issues. Her pediatrician doesn’t seem to conncerned that’s it’s autism. I’m wondering if I should have a developmental pediatrician see her. Some days are good other days I’m like what in the world!
Well, first, be comforted in the fact that you are not alone. We have all been through this. I am no clinical specialist or doctor, but in my experience, I would set up an appointment with a pediatric behavioral specialist. Most hospitals have them or can refer you. It may take time to get in for this appointment, but it will be well worth it. They are specialists and they are so great with kids. You will have to answer about a million questions but then, all at once, your questions and concerns will be validated. It may be nothing, but at least you will know how best to meet your daughter’s needs.