My child is strong and healthy. That said, at just four years of age, she has already taken part in occupational therapy (OT), vision therapy (VT), cranial sacral therapy, and yoga therapy (also called Integrated Movement Therapy or IMT). Her vision conditions, and early feeding aversion, have presented us with atypical challenges. Yet there is nothing “wrong” with Stella. No affliction that will define who she is. Deeply grateful for her essential wellbeing, I am always striving to provide the support she needs. An odd and awkward balancing act, at times.
I’ll admit that during her tube-fed days, while entertaining the worst possible outcome, I told myself that if she had to live her life with a feeding tube, the intervention could inform positive trajectories. I dared imagine her future as a groundbreaking artist exploring the increasingly common intersection of biology and technology. Or perhaps she could come to value food more than any average, orally eating person, and find renown as a chef who never enjoys more than a fleeting taste on the tongue but whose culinary innovations leave the ordinary far behind. These ideas seem foolishly focused on fame and success, but in my darkest postpartum, tube-feeding moments, they allowed me to envision a happy future for her wherein her difference was not just a detriment. I took comfort in knowing that the most inspiring people often have the most trying backgrounds. After a successful tube wean at just a few months old, she became an eater in short order. She is now four, and her sizable appetite won kudos this Thanksgiving from Cody’s 94-year-old grandmother. I can’t lie: I wear that compliment like a gleaming badge of honor. If Stella had needed her tube indefinitely, though, I like to think that we would’ve embraced it yet not let it dominate her identity.
I have worried about her far too much, and still do. More VT and OT are on the near horizon. Strabismus and amblyopia can affect motor skills, so the VT and OT are linked. When Stella’s eyes aren’t working together well, our world becomes less stable along with her binocular vision, and tantrums skyrocket. I question myself, my personality, my attitude, my words, my own diagnosed deficits, and then I question doctors, and PubMed.gov, and Google, to the point of black-hole depression. Instinctively, I blame myself for Stella’s every struggle. I prepare myself for the worst while researching, hoping, and double-checking in pursuit of the best.
My experience with motherhood is a soft, tropical breeze compared to the realities faced by the parents featured in Andrew Solomon‘s incredible and essential book, Far From the Tree: Parents, Children, and the Search for Identity. But then, toward the end of this gripping tome about parents of exceptional or “different” children, he notes that a couple in London chose to screen embryos, essentially genetically engineering their child, so as to avoid the father’s severe squint. (For those with stereoscopically typical selves and kids, “squint” refers to strabismus or misaligned eyes.) This particular anecdote helped bring the entire book home for me, and felt like a sucker punch to the gut. I imagined their alternate-reality, unscreened child, much like Stella or perhaps the inspiring Stereo Sue, who would have been born cross-eyed. Surgery, glasses, and vision therapy could have corrected it, with much joy and love to be had in the meantime. Yet, strabismus was deemed too much of a burden. What an ugly and spiritually impoverished world, I thought, in which technology eliminates differences. What a waste of potential and perspective. What a horrible message to send: “We only want a ‘perfect’ child.” As if that exists! Then I think of the four eye doctor appointments we recently attended in less than two weeks, and I’d be lying if I said I didn’t wish to spare her from stingy eye drops, and double vision, and headaches, and frustration, and eye patches, and exhausting daily vision exercises. But you can’t take the squint from Stella. It’s part of who she is. To cut that out of the picture would be to paint a completely different child, the thought of which is dark, insane, and brutalizing in the light of our love for her.
Stella’s vision and the severe pain from my milk, and subsequent trauma from repeated insertion of an NG tube by ER professionals and yours truly, have likely affected her personality or personhood. We’ll never know to what degree. To assume that the impact is solely negative is a biased, ignorant, and even dangerous assumption. Among many other strengths too numerous to name here, I see a child who is an incredibly strong and increasingly eloquent self-advocate and self-starter, and who is very in tune with how she feels and what she needs. (She is the opposite of a doormat–not angry, but aware and, well, adamant!) It’s possible that these building blocks could lead her to become a defender of others’ rights and wellbeing as well.
As I marvel at Stella’s abilities and resiliency and simply enjoy mothering and being with her, I am anxious about possible gaps in development and the winding road stretched out before us. As children grow, visual demands increase. More “near work” and expectations of longer attention spans. Learning to read and write. Using scissors. Making friends and maintaining eye contact and higher level relationships with them. With bifocals and a year of vision therapy (undertaken at age two) under her belt, Stella’s visual abilities have served her well until recently. Her visual system apparently has begun to reach its coping capacity and needs help in order to support her continued development. She will benefit from an increased eyeglasses prescription, and an OT evaluation to help create a more targeted approach to vision therapy. In the meantime, I pray surgery won’t be needed and wrestle with uncertainty about whether she should go to Kindergarten next year, as vision issues flare, and her birth date just a week before the cut-off for Kindergarten acceptance.
For the sake of sanity and enjoyment, I longed to read something other than strabismus-oriented studies, optometrist’s blogs, and medical journals. But I wanted meaning and relevancy, not fluff. Far from the Tree was the answer, and led to some sleepy days for me. I read all 700+ pages almost compulsively. Filled with the stories of parents of children with Down’s Syndrome, autism, dwarfism, criminal behavior, and more, the book is sometimes harrowing but always heartening. I found it a welcome relief from typical parenting fare, which tends only to feed modern parental neuroses and our fear-driven obsession with perfection. Most of the parents featured in this book love their children with a depth they may not have achieved outside of their unexpected journey. The line between difference and disability is often blurry, and in that gray area lie gifts for those open to seeing and receiving them. The vibrancy of deaf culture and the contributions of Temple Grandin are good examples, among many, many others poignantly detailed by Solomon.
I feel differently about my role and experiences as a parent, thanks to Far from the Tree. I was affirmed by the book, and I think just about any parent would be. Current turmoil and all, I am more determined to do whatever I can for Stella’s vision, yet less destructively worried. And this mindset may fuel better decision-making. Check out this passage from page 22, which brought me to tears:
“The attribution of responsibility to parents is often a function of ignorance, but it also reflects our anxious belief that we control our own destinies. Unfortunately, it does not save anyone’s children; it only destroys some people’s parents, who either crumble under the strain of undue censure or rush to blame themselves before anyone else has the time to accuse them.”
To Andrew Solomon, with whom, by the way, I share the dread-filled experience of waiting for the results of a baby’s head CT scan, thank you for writing this book. In regards to my daughter, I’ll inevitably worry, and wonder how much intervention is enough or too much, and blame myself at times. But as a parent, I move toward the challenges ahead with more grace, having read Far from the Tree.
Thanks for sharing. My daughter just turned 5. After a year of VT, she is on a 3-5 month break. (though she has been getting more headaches so we may cut the break short) I have wondered about whether she might need OT. She seems not to know where her body is in space. And I also have wondered about whether her emotional fragility and tantrums are connected with her visual issues. She has strabismus. She formerly had amblyopia and esotropia in one eye. Now the esotropia is alternating. Last month for the first time she “got” some of the 3D tests at VT but I think she still sees in 2D most of the time. I look forward to reading the book you recommended.
Hey Karen, an OT evaluation could be very helpful! Try to find an OT who can assess retained primitive reflexes. From what I understand, in the optometric community, there is debate about what exactly the underlying mechanism is, but some children seem to retain some of the reflexes normally integrated during infancy (like moro) and so motor control — affecting the eye muscles, the relevant brain-eye connection, as well as general gross and fine motor ability — is compromised. You can test for these reflexes and do exercises to integrate them, and vision therapy can be more successful after this work if it’s needed.
It makes sense to me that she would be having headaches if instead of one dominant eye taking over, both eyes are competing. I think that’s what’s going on with Stella to some degree. It can be an indicator of progress, however uncomfortable it is. Your hard work must be paying off, since she can now see some 3D!!! and both eyes are trying to work, but it can be a long road as I’m learning! I hope you will keep me posted on your daughter’s journey. BTW, over at sovoto there is a vision therapy support forum with boards for parents, adults going through VT, VT professionals etc. Check it out! I keep hoping there could be a vibrant community of parents over there so we can support each other.
Thanks. I tried to join Sovoto but had technical difficulties and there is no way to contact them unless you are a member. I look forward to hearing more about you and Stella!
Just posting again to check the follow the conversation box…
There is a new treatment for amblyopia coming out soon that you may not have heard about. We are anxiously awaiting its release, which should be any month now. It is a radically different approach from traditional VT, one that takes advantage of new technology (imagine that). http://www.xpand.me/amblyz/amblyopia/
Kudos to you, and all who care enough for their kids to assure a bright and happy future! I wonder if this alternating esotrope still has “retained primitive reflexes.” I think I’ll google that or, better yet, check pub.med 😉
btw I’m not sure alternating esotropia is cause for headaches, as it is the brain’s “solution” for eliminating double images with alternating suppression of the input from one eye or the other. However, the temper tantrums due to visual confusion, most certainly! I am picking up new lenses with prism on Monday. Stay tuned for glowing reports about finally discovering my mid-line!
Good points, Lynda! I know Stella is having double vision–it was revealed in a recent exam–but I suppose that’s not what Karen was referring to with the alternating situation. By the way, I think Stella is going to get prism glasses for near work very soon. So we’ll be thinking of you as we get going with those! Good luck, and I look forward to reading about your mid-line discovery.
Loved this post Amber! I had been looking at that book and will now spend the $15 on Kindle. As Heath has gotten bigger, and his diagnosis has dialed in more precisely and in some ways “worse” than I could have once dealt with, we are all more relaxed about it maybe just because it’s all we know! And disability/difference has become our subculture , so it seems “normal.” Another book I love is “Reflections from a Different Journey: What Adults with Disabilities Wish Their Parents Knew.” So illuminating and SUPER affirming, as most of the essays paint a picture of parenting that had a huge positive impact on the writers’ confidence and strength, despite mishaps here and there. Wishing you and Mighty Stella and Cody a great year and lots of adventures!
Love from Missoula, Jenny
Thank you, Jenny! And I’ve been thinking about something you wrote about–the fact is that disability/difference is just so common, that it is normal! I will absolutely check out that book. It sounds fabulous. I hope you love “Far from the Tree” as much as I did. Here’s to an affirming and wonderful 2013 for the Montgomery family! Love to you and Heath.
You are one of the most inspiring parents I have met, and I thank you for continuing to share your stories and Stella’s stories on your blog. She is very lucky to have you, and the world is so fortunate to have such a determined little girl 🙂
Thank you so much, Bethanie. Your words mean a lot! You were with us when our vision journey really began and I was always so impressed with your patience and grace even on tough days with two-year-old Stella, and in answering all my questions while working with her. You do it all with smile, too. Hope you and your little one are both doing very very well!