It’s 7am. I enter my son’s room, turn off the humidifier, turn on the fish tank light, and touch his shoulder. I tell him it’s time to get ready for hippotherapy. As he shrugs off his blankets, he mumbles something about sin notation and trigonometric functions. He lets me carry him, all 39 pounds of arms and legs, halfway down the hall before he tells me he’ll just walk. We walk into the master bathroom like every morning, and I help him onto the toilet. I had prepared his clothing the night before. I quickly slip his pajamas off and his clothing on, stopping to ask him if he’d like to wear a compression tank, or just a regular undershirt. He chooses a regular undershirt. I should have him dress independently, but I have to choose my battles. With 30 minutes until time to leave, there’s no time this morning. He looks up, his brown eyes boring into my own, and explains, with great intensity, the layers of the earth. I nod with interest. He says he is finished, stands, and I pull up the back of his pants while he manages the front.
My firstborn is 5 years old. He has high functioning autism. He appears neurotypical in many ways. He’s articulate and engaging. He loves to laugh and be silly. He loves to swing, slide, and run on the playground. He can be seen having pretend birthday parties for Mickey Mouse, and often brings an imaginary friend along on outings. He’s brilliant. Frighteningly, captivatingly brilliant. He read before the age of 2. At 3, he could identify any text font. At 4, he was learning Spanish and Chinese. At 5, his interests include trigonometry, roman numerals (to septillion), outer space, and the human body.
High-functioning autism can appear “easy” in a lot of ways. It’s garnering attention in the mainstream media, and movies and television programs include roles with HFA. But there’s another side that you don’t see. A side that often keeps me awake at night. A side that causes considerable heartache because I don’t know how to help him. A side that keeps me searching passionately for a way. For me, it’s something like this:
It’s setting an alarm every two hours at night so you can feed your 5 month old when he’s sleeping. You do this because his oral aversion is so severe, he refuses both breast and bottle when awake. It’s not leaving the house, because you don’t want to miss a nap and an opportunity to feed your child. And you do this for months, until the day he finally accepts feedings while awake. You do this so your child won’t lose weight and require a feeding tube.
It’s feeding therapy, starting at nine months, because he gags at even the sight of solid food. It’s giving your preschool child an appetite stimulant because he has no innate desire to eat. It’s having well-meaning family and friends tell you, “He’ll get hungry and eat eventually,” as you watch him lose weight and feel too weak to play. It’s blood tests to make sure he’s not ill from such a limited diet. It’s knowing the caloric content of a single goldfish cracker, both baby and full sized. (Or any cracker for that matter.) It’s hearing parents complain that their children want to eat all the time, when you’d give anything for a day when your child wanted to eat even a single meal. It’s your child not eating unless he’s at home, and only if it’s an ordinary day. It’s not eating if it’s a holiday or if there’s company. It’s stopping feeding therapy at age 4 because it is thought to be increasing his anxiety, and calling the same feeding clinic in tears at age 5 because he’s losing weight from food refusal. It’s worrying that your typical child will restrict her diet due to only seeing her brother eat the same 6 foods.
It’s a constant struggle with sensory needs and aversions. It’s purchasing $160 compression shirts you hope and pray will calm his desire for deep pressure so that he will stop bumping into peers. It’s weighted vests, compression vests, and weighted compression vests. It’s long sleeved shirts even when the weather warms, so the wind won’t “hurt (his) my skin.” It’s finding self-inflicted bite wounds on his arms when you forget. It’s spinning discs and swings and mini trampolines in your family room. It’s chewelry and saliva-soaked shirts. It’s hands in his mouth, even at age 5. It’s buying the exact same pair of shoes in increasing sizes because the sensation of a different shoe is unbearable. It’s noise cancelling headphones. It’s cutting his hair yourself in his sleep, because you can’t bear to endure the stress of a professional haircut again. Or the stares. It’s not being able to attend church services. It’s leaving grocery carts full of groceries, birthday parties, and restaurants because you know the meltdown won’t stop until you remove the source of sensory overload.
It’s crying the “ugly cry,” while your son sits next to you, seemingly unaware. It’s having to painstakingly explain what faces that are happy look like, faces that are sad, faces that are mad. It’s explaining that it’s not kind to laugh when someone is hurt and crying, over and over and over again. It’s doing these things while simultaneously being in awe of his baby sister doing these things with the ease with which one breathes.
It’s walking into a private preschool and finding your three year old restrained in a chair while the other children are at circle. It’s the realization that your child needs developmental preschool. It’s note after note sent home from developmental preschool about your child’s social difficulties. It’s children not wanting to play with your child due to his impulsiveness and inability to regulate his emotions.
It’s your three year old not being able to answer yes or no questions, though he can read an iPad manual with full comprehension. It’s your three year old writing the alphabet on the chalkboard over and over and over. And him sobbing in frustration while yelling, “that’s not the right answer!” for hours when he can’t get them to look just right. It’s elation over hearing your child speak to someone spontaneously, even if it’s a memorized script. It’s buying every toy you think might possible help engage him to play in an age appropriate manner.
It’s agonizing over medication. Medication to stimulate appetite. Medication to decrease impulsivity, medication for anxiety. It’s dietary supplements and epsom salt baths. It’s essential oils and meditation tracts and melatonin and magnesium lotion. It’s being willing to do anything… anything to help your child sleep. It’s chronic exhaustion when he doesn’t. It’s worrying that your child will flee from you in public. It’s worrying that your child will never be happy. It’s helplessness when he seems tormented by the confines of his own body. It’s seeing your child struggle as though he’s in a world who doesn’t speak his language.
It’s speech therapy. Occupational therapy. Physical therapy. Hippotherapy. It’s developmental therapy. It’s psychologists and psychiatrists and second opinions. It’s ABA or Denver Model Therapy, or Floortime and Pivotal Response, or… It’s medicaid waivers and insurance and going out of network. It’s waiting 9 months for an appointment your desperately needed months ago. It’s praying therapies will be covered, but being willing to sacrifice if they aren’t. It’s researching like it’s your job.
It’s guilt and anguish and anxiety. Because you know it could be worse. Because, even though there have been tremendous gains, you want more. Because… what if you done this thing differently or that? It’s anguish because the very things that are intended to help him, seem to cause him such distress. It’s anxiety over kindergarten years in advance. It’s guilt over having a second child. It’s guilt because the very things your first child struggles with acutely, come so easily for your second. It’s wanting a break, but feeling too guilty to enjoy it when you get one.
But then there are also the times when the sun shines through, and these struggles are bathed in the shadow of great things. Ordinary things. Like hearing “I love you.” Sharing a toy, unprompted. A spontaneous drawing of a house. Going to the restroom by himself. Stomping in a mud puddle. Of him being just like any other ordinary, dimple-cheeked, 5 year old boy.
And there’s connecting with other parents who “get it.” Whose children only eat crunchy things the color of goldenrod. Whose children still drink from a cup meant for a toddler. Whose children chew holes in their clothing. There’s networking, and sharing, and commiseration. There’s love and acceptance. Laughter and tears. There’s not being “different.”
So while I am very thankful my son is considered high-functioning, there’s an often-times invisible force that autism exerts that is anything but easy. But my son… he is who he is. He needs me to love him unconditionally, even the difficult parts. He needs me to believe in him, to advocate for him, to gently push him outside of his comfort zone, and to continue tirelessly to help him gather the tools he will need to navigate this world.