Let Yourself Be Human
I remember the day I found out I was pregnant with our daughter. We had a 2 year old son, already, and I was perfectly content with just one child, after a horribly difficult pregnancy and delivery. When I found out we were having another baby, I cried– tears of overwhelming fear and disbelief that I was about to have to go through the agonizing sickness and pain all over again. But, like most things in life, the idea grew on me. I started actually anticipating holding a peaceful, sleeping baby again– at breathing in the heavenly scent of a newborn– “a little smell of heaven still left on them,” as my Mom says.
When I found out we were having a little girl, I was so excited. I pictured fancy dresses and pigtails. Tea parties. Barbie playdates where we tried on outfits for hours. I imagined someone who would love cooking and baking as much as I do– someone to read Charlotte’s Web to and draw pictures with. After a son who is “all boy” and doesn’t pay much attention to anything unless it has big wheels, a loud engine, or bright lights, I was loving imagining a quieter little person to share some of my own personal interests.
Noelle was born right before Christmas. “She is such a QUIET baby!” the nurses cooed. “She will be the best baby and sleep through the night right away– you wait and see! You are just so lucky she is such a contented little girl!” I was so happy and almost couldn’t believe my luck. Noelle was so calm and content that she didn’t even fuss when the nurses do that cringe-worthy, “Mother’s worst nightmare” blood drawing where they squeeze the infant’s foot. Noelle took it all in stride. I couldn’t believe my luck. FINALLY. A chill child.
My happy picture evaporated a few days after she was born. Noelle turned from a quiet, sweet baby into a screaming, torturous monster who wailed round the clock, pausing only for 10 minute catnaps in our weary arms. The second we placed her into her crib, the blood curdling screams began again. Doctors called it “colic”– that baby illness that no one really knows anything about, and no one knows how to cure. “They usually just grow out of it,” doctors would smile at me, handing me directions for “baby soothing techniques.” “Just hang in there, Mom. She will grow out of it sooner than you think.”
Sadly, I find it obnoxious to be called “Mom” by people clearly twice my age, over whom I have no parental responsibility. Second, when I come into your office and wait in the germ-infested waiting room, functioning on 1 minute of sleep, trying to corral a busy toddler and keep the child from wailing loud enough to wake the dead, please give me something better than “just hang in there.” Unless you’re going to come over to my house and see the clock reading ghastly times no one should ever have to see, like 1:23, 2:17, and 3:48 AM . . . then please don’t smile and tell me this will pass. It may pass, but so does a kidney stone. Oh– do you mind if I lie down on these chairs while I wait?
Torturous nights turned into even more exhausting, torturous weeks. Then months. I began to feel nauseous from lack of sleep and wonder if I would ever sleep through the night again. My dreams became odd, vivid nightmares from which I could not awaken, so weary was my body. I was having trouble distinguishing the nightmare of reality from the nightmares of my dreams. Noelle was diagnosed with a dairy allergy. We switched her to a dairy free formula. Voila! SO much better. She still wasn’t sleeping through the night, but we could get 4 hours at a time, and the first night I woke up after 4 hours in a row, I felt like I could get up and run a marathon, or pound my chest and do a Tarzan yell.
Slowly, our lives crept back toward normal. She got old enough to eat foods, and although she was an extremely picky eater and still didn’t like to try new things, we were making progress. The doctor allowed us tentatively to try to introduce dairy back into her diet, and she seemed to tolerate it. I was starting to feel like a “mother of two,” instead of “absolutely exhausted zombie slave of demon baby.” I picked out an Easter dress and a pretty bow for her hair. I got her a pink blanket. I started to *almost* enjoy having her around.
But something still wasn’t right. She had strange brown spots on her back. Doctors diagnosed her with NF1, the abbreviated name of Neurofibromatosis. We don’t know too much about NF1, except that in extreme cases it can cause tumors to grow on your nerves. If these tumors choose, say, the optic nerve, then you can go blind. You can also have bone damage, skin discoloration, vision problems, and a whole host of other scary things happen. Our baby was 1 year old, and we were already overwhelmed. One year down, who knows how many more to go. We traveled hours to specialists. We heard doctors of every kind tell us what we should do, and what she could die of tomorrow. We grew weary of running on adrenaline and wondering what horrifying medical diagnosis we would hear next.
Then one day the pediatrician said, “Why doesn’t your baby talk?” We had been so wrapped up in trying to figure out if Noelle was about to die that we had completely forgotten . . . oh yeah. She is a baby. She should be babbling. After hosts more tests and MANY more doctors, and more hours of therapy than I can count, she was diagnosed with autism by a blase, “it’s true because I say it’s true” young doctor with no children and a bad attitude to compensate. The words stung, and I refused to believe them.
We had already been doing physical therapy due to Noelle’s NF1 developmental delays, but we added speech therapy and occupational therapy. My son started preschool, and we would get up early, run Christopher to school, then rush back for Noelle’s therapy appointments. I had to have the few foods she would eat around me at all times, and I listened in horror as some of the other moms in the therapy waiting room told me “Oh my daughter only eats foods that are brown,” or “yes she lived on pancakes the first few years of her life but we had to cut the pieces exactly the same or she would throw them at us.” I saw weary, care-worn parents tell me how their children never slept and threw mammoth, meltdown-level tantrums if their schedules were interrupted. I felt a knot of despair in the pit of my stomach. Was this my new reality– caring for a grumpy, OCD baby who hated to be held and never ate or slept? I didn’t sign up for this.
When we moved to our new house, Noelle’s daily life and schedule changed drastically, and she began to throw some mammoth meltdown tantrums of her own. Her OT said that she had a sensory disorder, which means something to the effect that, when I, for example, put on my shoes and socks and go outside for a walk, all I think about is the walk, and maybe not getting run over by a car. Noelle feels the socks on her feet. She can’t turn that sensory input off. She hears every single sound in a deafening cacophony of noise that won’t turn off. She feels the clothes on her skin. She sees the bugs walking around and can’t stop fixating on them. The stimuli that most of us tune out automatically cannot be tuned out by her, and she gets so overwhelmed that she screams to make it stop. And since she can’t talk much yet, she can’t even tell us what specifically is bothering her, making it even more frustrating.
Children with autism cling to routine. And with a completely new house, environment, and schedule, her sleep patterns went off the deep end. I felt like we had a newborn again– sleeping for 45 minutes and then waking up, screaming. The OT taught us some deep pressure and relaxation techniques, and we started to see some improvement. But even as we struggled to learn how to relate to this strange, foreign little person, and tried to love her as she flailed and screamed and tried to bite us, we learned to fend off the attacks of well meaning strangers.
“Why don’t you just spank her? That’s what she needs.”
“Well I never heard of autism when I was a kid. I think it’s all just a made up thing to make doctors more money.”
“You know if you give her that toy when she’s crying she’ll never learn.”
“Just let them cry it out. They’ll sleep eventually.”
“You’re home all day– why don’t you have time to xyz? I take care of my kids AND work a full time job, and I manage to get it done.”
“Yes I agree. Something wrong with her for sure. I’ve never seen a baby throw a tantrum like that.”
Some of these remarks were from strangers, and some were from well meaning acquaintances. But it’s hard to explain to someone outside of the life we live that a sensory meltdown is different from your typical tantrum (and yes, I can tell the difference, and yes, Noelle has both). A meltdown is a panic-strewn, almost maniacal outburst of a child who is so overwhelmed by the stimulus that they feel as if a fire hose is being pointed into their faces. They will bang their heads on the wall (she recently did this and gave herself a bloody nose), refuse to eat (to the point of faintness), throw things, hurt people– and none of this is voluntary. It is their “fight or flight” response to the fear they feel. Usually a child going through a sensory meltdown needs to get to a place of quiet where he or she can regulate breathing, thought, and panic levels. If you see a mother at Target in the corner, shielding her screaming toddler from the world and rubbing his legs firmly, that’s what you’re seeing– a brave warrior trying to get her chores done, while soothing her baby and trying to block out the stimulus and applying deep pressure attempting to soothe him. If you put on your empathy glasses, you will start to see so many things in a different light.
Slowly I began to accept that my child really does have Autism. The friends, family, and caring therapists who allowed me to come to this conclusion without stuffing it down my throat showed such grace and kindness that I almost can’t put it into words. When a child receives a diagnosis, the parent receives that diagnosis, too. And allowing someone to come to acceptance of what this means for her life is a stark, lonely, and individual journey. Everyone processes this information differently. And, in a way, we “grieve” for the vision we had– for the child we imagined. And, slowly, we start to have a new dream, of the child we have. But it all takes time, and no one can say or do anything to make it sink in any faster.
I began to realize that having Autism does not make my child “sick.” It does not make her “bad,” or “out of control,” or a “brat.” It means that, basically, her brain has round holes, and the information coming at her is in square pieces. And somehow we have to learn, and also teach her, how to gain the tools to cut the square information into circles that her brain can process and understand. So what do you do when your child is a plum, while everyone else is an orange? Your child isn’t wrong. Your child is still sweet. Your child is exactly like she is supposed to be. But she just simply isn’t like everyone else. And she never will be. She will always see things and relate to the world differently from everybody else. What do you do with that?
I’ll tell you what you do. You accept your child for who she is. You learn that loving her unconditionally means that you love when you can understand, and you love especially when you cannot. You learn that what people say really doesn’t matter, at the end of the day. You learn that even the smallest step of progress– saying a word, eating a new food– is a supreme win, and you have the right to celebrate it.
You learn that life goes on. We have school activities I cannot attend, because Noelle will not sit through them without screaming from all the strange people. I miss church sometimes, because she can’t leave the house. I have to turn down company, and visits, and vacations sometimes, to put her first. I have to sometimes tell Christopher I can’t play legos because I’m trying to massage Noelle’s legs and trying not to burst into tears because I’ve had about 2 minutes of sleep. I have to bear the nosy questions of strangers and deal with the judgmental stares when “that kid just won’t calm down. I don’t understand why the mom doesn’t spank her. SHAMEFUL.” I have to accept that caring for her means that I have to do what is best for her, even if sometimes others don’t understand. I am learning to just do the best I can.
I am learning to allow myself to be human.
Parents really are an amazing breed. No matter if they are working parents, stay at home parents, single, or married . . . the good ones never stop working to make their kids’ lives better. They stay up in the middle of the night with eyes almost forcibly closing from exhaustion, and make sure their kids are ok. They go out for Pedialyte at 3 AM. They sit in line at urgent care on the weekends longer than anyone should ever have to. They attend school events and sit in the blazing sun for hours during sports games, just hoping to see their little guy or gal have a chance to play. They help sell pizza fundraisers, and then secretly buy 25 pizzas just to make sure their kid makes the quota (What– you don’t have pizza for Christmas, New Year, and Easter too, until the next fundraiser comes around??? haha). Parents do all of this fueled by about 4 hours of sleep and gallons of coffee. They see their hair turning gray, their waists getting a little rounder, and their clothes getting a little shabbier. They collapse from exhaustion at the end of the day, check on their kids every time they get up throughout the night, and then rise up early to start it all again.
Parenthood is a hard job. It is the most demanding, most heart-wrenching, most difficult thing you will ever try. It is also the most rewarding. It is the most beautiful, the most “dig to the core of your being and see what you’re made of” task that you will ever undertake. Much like a garden, we may not see the fruits of our labors now, but just keep going. Keep tending. Keep watering. Keep watching. And eventually, one day, you will look outside and see fruit– and know that all your hard work paid off.
Let Yourself Be Human.
The laundry will keep. The wall can be repainted. The kids will learn to eat different foods, and one day they will probably talk. You may one day be able to go to the store without rushing through like you’re running a sprint before the Juicy Juice runs out. You will send up many desperate prayers and look wearily at your clock through the wee hours of the morning, wondering if you will ever sleep again. You will realize that only one thing matters at the end of the day: your children. Just love them. That’s the best thing that any parent can give a child. Love him or her, exactly as he or she is. At the end of the day, that’s the very best and truest kind of success.
You did it. And I’m just so proud of you.
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Oh Emily, what an eye opening blog. When I went to college in the late 70’s, I don’t even know that we ever discussed Autism. And I was not prepared when students began being on my class list with the label, Autism. I was not prepared for the screaming, the hours of meeting with therapists, all telling me different things to “try”. And listening to the moms who were all stressed. I learned as much or more from my Autism students than they learned from me. I really like your round hole, square information picture. It helps me get a better picture of what is happening for these student. Could I print and share this blog with any families in your situation? I think it could be very helpful. One thing they all have in common is that they all feel very isolated.
That means so much to hear you say that, Diane! Of course– feel free to share with anyone who could be encouraged. No one ever struggles alone. Your students are lucky to have you! 🙂
Hugs to you! These are definitely the things that don’t come in the instructional manual. But I think you have definitely nailed it with that last paragraph!
Thank you sweet friend! <3