“There are things not in your book. There are paths outside this garden.”

My husband expressed some reservations about my recent posts about my daughter. He worries that someday D will be able to read this and will be hurt by things I have said. So I think I need to clarify the point I wanted to make. D is difficult to handle a lot of the time. So are all small children, but her particular set of clinical peculiarities makes her slightly more challenging than most. But I love her wholeheartedly, for who she is and always has been. The therapies D does are not an attempt to “cure” her. I understand why other parents of autistic children (or “children with autism”, as some parents prefer; I don’t, for reasons I hope will soon be made clear) choose a different path. It would be unfair for me, as someone who is able to have a relatively linear conversation with my daughter, to judge parents with non-verbal kids, or kids who had a distinct regression, for seeing autism as far more insidious than I do, and for thus taking a more aggressive approach to helping their children. Parents who try different diets, different vitamin supplements, even things like hyperbaric oxygen chamber treatments — these things aren’t harmful, and if they help certain children make gains in social communication or reducing the frequency and duration of meltdowns, that’s awesome. We have dabbled in a few supplements, and I try to pay close attention to any dietary triggers D might have…but overall we have chosen a behavioral approach rather than a biomedical one, because I don’t see any evidence, in D’s case at least, that autism is a “disease” that needs curing.

We wanted to give D treatments that would help her adapt better to a world that isn’t made for people whose brains work the way hers does. We do a ton of play-based therapy, which, among other things, has helped her learn how to play in a way that looks familiar to other kids, so she doesn’t become isolated due to her more esoteric interests. We have done occupational therapy, to help her learn fine motor skills that are important both in academic/social environments and in self-care. We have done speech therapy that focused mainly on pragmatic speech, so that she would become more confident in her ability to express her own thoughts rather than recite scripts, and so she could begin to communicate in a reciprocal way with her family and her peers. All of those things simultaneously help her better regulate her moods, identify her emotions, and cope with frustration. She does a lot. Play is her work, and she works hard.

Many people would look at that paragraph and ask how we can possibly say we aren’t trying to change our child if we’re making her do all that. But the thing is, D herself, who she is and how she works and what she loves, is fundamental and unchangeable. And that fundamental, unchangeable part of her is inherently autistic. It’s not something that can be separated out and cured. She has been so clearly and entirely herself since the day she was born that it is impossible for me to imagine a D who is not autistic. We do these therapies as an early intervention so that she learns the skills she needs to integrate herself into society. But there is an even larger part of this equation that is about learning, as parents, how to nurture this particular “square peg”. Probably the best possible example of how these two aspects come together happened yesterday: We went strawberry picking.

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Almost exactly two years ago, I took D strawberry picking for the first time. She was two years and three months old. I was about 6 months pregnant, maybe 7. I had been looking at adorable pictures on various friends’ Facebook pages of their two-year-olds strawberry picking for the previous couple weeks, and I was totally psyched for this field trip. We were planning to meet some other kids there. We read Blueberries For Sal that morning, and D walked around the house throwing a variety of foodstuffs into a beach pail and announcing, “Kerplink, kerplank, kerplunk!” We were ready.

We got to the farm and almost immediately the whole thing started to collapse like a shoddy toothpick castle. D refused to pick any strawberries. She refused to even try any that I picked, declaring, and I quote, “Strawberries are yucky.”

“What are you even TALKING about, strawberries are yucky??” I spluttered. “You LOVE strawberries.”

She ignored me. I looked around, desperately, to see if any of my friends had arrived and missed me, wandered off to a separate patch. If only she could see other kids picking strawberries, I thought, she would see how much fun it could be. There was no one. At a farm 15 miles from our apartment, I had suddenly never felt more alone in my life.

D pulled heaping handfuls of soil from under the strawberry plants and let it float to the ground through her fingertips. I ignored her and merrily trilled, “Kerplink, kerplank, kerplunk!” through gritted teeth. Modeling behavior. Modeling behavior.

She jabbered in the nonsense language she often lapsed into as she sprinkled the dirt onto her head. “Honey, no,” I said, sternly.

“Honey, noooooo,” she repeated as she began to rip up the leaves of the strawberry plants.

“Seriously, I mean it. Do NOT rip the plants. NO.” And then she threw dirt over my head. As it settled on my eyelashes, I stood up, dusted myself off, and said, “OK. That’s it. We’re done.”

That’s when she ran.

D bolted at top speed through the rows of strawberry plants, crushing fruit beneath her sandals. I tried to chase her, with 25 pounds of extra pregnancy weight hanging off me, under the broiling summer sun, for just a moment, before I gave up. FUCK THIS, I thought to myself. I stomped as quickly as I could in petulant fury across the fields, screeching, “COULD SOMEBODY PLEASE GRAB HER BEFORE SHE HITS THE PARKING LOT??” at all the strawberry farm attendants who were staring, mouths agape, at the spectacle.

Someone did eventually stop her, and I actually managed to bring a partially-filled flat of berries up to the front of the field — I had picked enough that I felt obligated to pay. As we stood at the checkout stand, I held D’s wrist so tightly, I’m ashamed to say, that I’m pretty sure I bruised her, since she was trying to wrench herself, screaming bloody murder, out of my grasp to dart away again. I ran into a friend and her child in the parking lot, but I have literally no recollection of what we said to one another. All I remember is seeing red. Have you ever literally seen red? I think it happens when the rage in your brain pushes all the blood vessels in your eyeballs closer to the surface. That’s how science works, yes? My field of vision was the color of blood. It wasn’t the obstinance, or the destructiveness, or the wanton disregard for her personal safety. It was the unavoidable sensation that she had not even been on the same planet as I was. This was not a fun outing gone wrong. This was simply a set of perpendicular lines. D and I did not intersect, emotionally or functionally, at any point during that entire activity.

In the car I began to yell, but I couldn’t even come up with words to describe how I felt. I simply started wailing, huge heaving sobs. And in the backseat, D began to laugh hysterically. She didn’t realize I was crying. She thought I was laughing.

It was a real low point in our relationship, let’s just say. My friends eventually arrived at the farm long after we left. The pictures they posted on Facebook were adorable and made me want to stab myself in the chest.

Yesterday, I took D strawberry picking. Different farm, brother now extant, and accompanied by the same friends that we had crossed paths with in the parking lot two years ago. We walked up to the patch that the proprietors said would be most bountiful; I figured if D didn’t have to dig too deep to find good berries she might find the process more engaging. She picked about 5 berries, and very calmly said, “OK, I’m done.” I tried momentarily to cajole her back, but she said, “No thanks.” So I let her run off, because we’ve reached a point where I can now actually trust her to stop if I say stop…mostly. There were goats on the farm, and she wanted to pet the goats. It was understandable. I know she prefers fauna to flora, as a rule. I tried a bit harder to get her brother, who is about 6 months younger than she had been on that first outing, to participate in the activity at hand, but he just wanted to eat the berries I picked and tromp through the rows of a muddy cornfield. And then he joined his sister and her friend by the goats. There was also a young calf that they all loved. An older child pointed out that they could feed strawberries from a nearby patch to the animals, so D and her friend proceeded to do just that. My friend and I then moved our picking operation to the opposite side of the same patch. I literally met her halfway.

D is always going to be a little bit in her own world. But we, as a team, have come so far in two years that it makes my heart feel like it’s going to burst some days. My love for her is overflowing. I don’t want her to change who she is. I love who she is. I just wanted to find a way for us to meet halfway.

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Recently, a boy named Alex Spourdalakis was brutally stabbed to death by his mother. He is only the most recent in a line of similar murders. As I said earlier, my experiences simply cannot compare to those of parents who have non-verbal, non-toilet-trained, violent and unpredictable autistic children. But this woman apparently, based on the support she received prior to the murder from Andrew Wakefield and the anti-vaccine activists from Age of Autism, subscribed to the idea that autism was this THING that afflicted her child, that had somehow stolen her real son from her, that needed to be cured at all costs. I’m willing to bet that at trial we’ll hear about things like chelation and bleach enemas, all these awful treatments that desperate parents try when it is too hard to accept that autism is part of who their child is, down to their very core. Behaviors can be changed, both on the part of the child and the parent. But Alex Spourdalakis was not a “child with autism”. He was an autistic child. And now he is dead. I know his mother was overwhelmed in a way that I couldn’t even presume to imagine. But I truly believe that the only way to keep more awful tragedies like Alex’s from happening is to fight for autism ACCEPTANCE rather than autism AWARENESS. Awareness is the first step. But it’s not enough. Alex Spourdalakis’ mother may have loved her son, but she never accepted him.

I love my daughter. I became aware that she is autistic; I accepted that she is autistic. And now I’m on the next stage, which is EMBRACING that my daughter is autistic, recognizing the challenges but still loving every inch of her. She works so hard, but she’s working to change and improve BEHAVIORS, not who she innately is. As a parent, I try to do the same…so we can continue to meet each other halfway.

I don’t have a problem with D reading this someday; I actually hope she does. Because I want her to know that despite any sadness and frustration I have as a parent, it doesn’t affect how I feel about her as my child. She’s the best. I can’t imagine having a different daughter. She’s the best.

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5 thoughts on ““There are things not in your book. There are paths outside this garden.”

  1. Beautiful Mags. She is the best and you are the best mom for her. So glad you shared this. Acceptance! Exactly! I love her exactly as she is too. She is magnificent. I think of her often when I make up silly songs for Archie. I know she would like them. I picture her sweet face smiling up at me and singing “let’s change your diape!” The way she enjoys things is so deep and pure. She is a true gem. And doesn’t need one bit if change in who she is. It’s so great you are helping her find behaviors that will make life easier for her and you while still nurturing her dahlianess. I love you both.

  2. Maggie this is truly beautiful! Can’t say much beyond this on account of not being able to see the keys through my tears. Dahlia is unbelievably lucky to have you, and you she! You are an amazing mom! Your courage, patients, understanding, and love are inspirational. K

  3. thanks for sharing. also so glad you two have each other, and that you have found a way for your strong, intelligent voice to be heard.
    our way of dealing with experiences where we seek to meet in the middle “process, not product.” (or as my brother heard me say ‘processed nut product’). let go of the idea of what you think “should” happen and allow for what is happening. whenever possible.

    • ” let go of the idea of what you think “should” happen and allow for what is happening. whenever possible.” Yes! This is so true and so smart.

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