Since today is world autism awareness day, I am featuring the story of a very close friend who happens to have a non-neurotypical child. This post is an open letter to all parents and caregivers everywhere about what it really feels like being a parent of a child who does not fit into a check-box of what society deems “normal.” With this letter, you will get a honest glimpse of the challenges, heartaches, and triumphs experienced when parenting a sensory-challenged child. Read and pass on to all who may be struggling with similar issues; know that you are not alone.
Dear Mom at Your Wit’s End:
Hang in there. Iʼm not talking about a kitty poster that reads, HANG IN THERE. It’s almost Friday!” No, I’m talking about the “you are doing better than you think and even though there is no ﬁnish to this race, you have to stay on the course, so hang in there” – kind of hang in there.
Let’s be honest. Nothing actually prepares you for motherhood. You can read baby books and take classes and talk to a thousand other moms, but only the hands on training you learn during one parenting crisis helps you through the next. And even if you ﬁnd guidance in the countless resources out there, Iʼd venture to bet that you did not read anything before you had kids about how to parent a special needs child. I read What to Expect When You are Expecting, not The Out of Sync Child. I wish I had.
My oldest child just celebrated her sixth birthday. Her name is Reese, and she is so smart. She is funny. She is beautiful and is the most amazing artist. She laughs with her whole body. She loves her brothers. She has a memory that is frighteningly detailed and accurate. And for the last six years, she has been my most difﬁcult challenge each day.
Reese is not a neuro-typical child. We do not have a diagnosis yet. Why? Why is it that nearly every day of the last six years has given us at least one example of atypical behavior, but we do not know what is wrong? Because whatever it is, it is mild.
I have had several quasi-opinions that she falls on the Autism Spectrum. These have come from professionals who either have experience with or who work directly with Autistic children children observing her in a non-professional capacity. I have had others who believe that she has Sensory Processing Disorder. This comes from her preschool teachers who watched her grow in the same school from the time she was eighteen months old until she was ﬁve.
Then I’ve had professional opinions. These are the ones that are the problem. The county school board observed her for ﬁfteen minutes in her preschool classroom and determined she was ﬁne. Her pediatrician basically informed me that my parenting skills were poor and my discipline methods needed improvement. He recommended books to assist me in this area. Her kindergarten teacher told the special education review committee that Reese was one of the top students in her class, had no academic, behavioral, social, or emotional problems at all, and she told them she was not sure why we were having the meeting. Fortunately, two days after her birthday, I received a call that the school board accepting my “adamant parent” petition, and I just signed the papers to have her assessed!
I know that the assessment will not be a magic solution to our problems. But I pray that it will provide us with guidance on how to get through each day.
I am not sure how many more mornings I can make it without yelling to the point it permanently damages her when she cries because the dress that I picked out “hurts” her – even though she wore it Saturday and it was fine. Or when I have to put her socks on her 3 different times and she is still crying because it “hurts.” Or when her coat is too tight. Or when the laundry is piled up and jeans are the only option. Or when I have to buy her another pair of shoes because she has broken the last pair from walking on her toes constantly.
I wonder how much longer the excuse “she is just sleepy” is going to work when she has a breakdown in public or at a family gathering. I wonder how much longer before the other kids start to notice – its already happening on the bus with the older elementary kids. She is not that far away from being one of them. How will I handle that?
I just want a day where I don’t find myself annoyed at her behavior. A day where I don’t have to force myself to say more positive things to her than negative –because right now, I say “stop running”, “sit on your bottom at the table”, “you are six years old, you have got to buckle the seat belt yourself”, “do not mention Frozen one more time today”, “why are you crying now” so much that I have to work hard to balance out with good things so that I do not crush her or leave her with nothing but negative memories of her childhood. A day that she didn’t cry (because it is not complete breakdowns every day, but I cannot remember a day that she went the whole day without tears at some point – and that is a soul crushing to me.)
I am not sure how much more of the guilt I can handle. The guilt of losing my temper over things I know in my heart she truly cannot help. The guilt of allowing her to “get away” with things that I have to get on to her siblings about. The guilt of feeling like I have failed her and that this is my fault.
So, I hang in there. I pray. I lean heavily on the support of my spouse and my mom. I crawl in bed with her at night and let her complain about how it was a bad day at school because someone was snoring at nap time and it hurt her ears. I remind her to think of happy thoughts when things bother her. I scratch her arms (her most favorite thing in the world.) I find the things that help – soft, calm voices; noise machines at bedtime and quiet time; routines; scratching and rubbing; tucking in tight; as much free time to run and swing outside as we can get. I do not give up fighting for her.
We have to hang in there. We cannot let the rejection and the ﬁnger pointing get us down. You know your child. You know your child better than the pediatrician. Better than the teachers. You know her better than well-meaning friends and relatives. You know if something is not right. Do not let them convince them it is you. If only you were a better mother. If you would just stop giving in to the tantrums. She would learn to put on her socks if you would make her learn. Let her fall and break her arm – then sheʼll learn not to constantly twirl and spin and walk on her toes.
I hang in there because I love her with all my heart. I tell her that. I show her that in as many ways as I can and in ways she will not recognize until she becomes a mother herself one day. And that keeps me going.
Andrea Womack is the mother of three beautiful children. She currently lives in Olive Branch, MS with her husband of eight years. When not being a mom and acting as an advocate for her child, Andrea works part-time as a divorce attorney at a local law firm. She enjoys crocheting, binge watching shows with her husband, making dresses for Reese, and hiding in a dark closet to eat her kids’ candy without them knowing it. Andrea will soon launch a blog about her trials and triumphs of being a mom.