Several months ago, Patrick and I took the kids to the park. It was just a normal day and normal outing until we had a chance encounter with another parent and her son. Patrick was with Sloane on the swings and I was with Finn on a slide. Nearby, a little boy was playing with a remote control monster truck. Finn could hear the truck and asked me what it was. I explained that there was a little boy near him who had a truck that could move around the park if the little boy pushed buttons on a remote control. Finn asked if he could feel it. Not wanting to bother the other child, I said we’d explore one together soon. The little boy’s mother heard this exchange and came over to encourage her son to share and let Finn see his truck. The little boy used his remote to drive the truck closer to us, not knowing that Finn needed to actually hold the truck to “see” it. I brought Finn closer to the truck and to the boy, and then crouched down to their level. I said, “hi, this is my son Finn. What’s your name?” The little boy answered, “Thomas.” I proceeded. “Hi Thomas, Finn would love to see your monster truck, but his eyes are a bit different from yours so he needs to use his hands to see the truck if that’s ok with you?” Thomas said, “but my eyes can see the truck.” I replied, “I know and that’s so cool. For Finn, he uses his hands or his ears to explore things the same way you might do with your eyes.” I could tell the child was a little confused, but he reluctantly handed Finn both the remote and the truck. His mom who was standing within earshot rushed over in that moment. She excitedly said, “Thomas! How cool is this?! You get to meet a real life super hero today!! One just like we have read about at home. Remember how we talked about how all children and people are different and how cool that is?” Immediately her son got as excited as she was to meet and interact with my son. The little boys played for a while and Finn laughed every time the buttons he pushed made the truck move. I was fighting back tears of joy and Patrick was doing the same as he heard the whole exchange.
I was astonished by this mom — astonished by her quick and perfect response; astonished that she not only knew what to say in that moment, but that she was reinforcing it at home. This is not the typical response as much as I wish it were. We left the park and loaded the kids in the car. Patrick ran back over to the mother and thanked her. He thanked her for doing her part to make our son feel special in a way that means “cool” and not “outsider” or suggests pity; for helping her son learn to do the same with all the Finns he encounters along the way; and for making us, as parents of a child with a disability feel a little less worried about his future interactions in the world. She, of course, replied in a way that indicated this was a natural response and no big deal, but for us it was enormous.
Be this parent. She is my super hero.
After this encounter I started thinking a lot about the concept of super heroes. I loved that my son got to feel special for just being who he is and was born to be in that moment at the park. Yet, I think every child, disabled or not, should get to feel this way. All of our children are little super heroes. They all have their own unique characteristics that make them special. Our job as parents is to help them feel proud of those differences, but even more importantly, to recognize and celebrate the differences in other children. That is the key. If we are not only accepting but excited by the differences in others, our kids will be too.
And yes, we left the park and immediately drove to the store to get Finn his own monster truck. Every time I see him playing with it, I think of Thomas and his mom, a real life super hero.
When Finn turned three in September he aged out of the early intervention system just as all children with a disability in our country do under the Individuals with Disabilities Education Act (IDEA). As part of this federal law, the school system takes over services for children with disabilities at age three — this is when the often nerve-wracking IEP meetings come into play and all services move from in-home or community-based settings to school-based settings.
Due to Covid, Finn’s transitional and first IEP meeting was delayed, but the end to our early intervention services was not, and the transition occurred immediately on the day before his birthday. For most children in the early intervention system they are seeing a multitude of service providers — for Finn that was his Teacher of the Visually Impaired (TVI), Occupational Therapist (OT), Physical Therapist (PT) and Speech and Language Pathologist (SLP). I know without a doubt, that having these critical services over the last three years have been hugely instrumental in furthering Finn’s cognitive, social, emotional and physical development. Had we waited until now to begin these services, he would assuredly be at much greater developmental delays and at a greater disadvantage entering the school system.
When Finn was born, our pediatrician quickly referred us to early intervention. I’m so thankful for that and that early intervention exists as the first line of defense for parents like us. We were told that we’d be provided with services to help support both us and our newborn son. That was true. BUT, the part that neither our pediatrician nor we understood at the time was what specific services we actually needed. Standing there in his office, neither he nor we had ever known a blind child before Finn.
We enrolled in early intervention and we were told that we’d be given a Developmental Therapist (DT) to come to our home and work with us to ensure that his development would progress. When the DT came to our home for the first time, I was so thrilled to have someone coming in to tell me what to do — to tell me how to raise a child who was blind! Unfortunately, I learned within minutes that she had never seen a blind child before either. I was at a loss and felt like every place I turned for help and information, kept leading me to a dead end. I mean no disrespect to our, or any, DT. She was knowledgeable and helpful in many ways – she just didn’t have the specific knowledge and support I so desperately needed at the time -knowledge about children with blindness.
I did my research and soon learned what TVI and Orientation and Mobility Specialists (O&Ms) were. I’d never heard either of those terms despite having a Masters’s in Education Policy — or if I had, I hadn’t retained the information having no idea how important one day that information would be for me. After learning that these two roles were of the most important for children who are blind, I began advocating to secure these services for my son. It took the better part of six critical months, but I was eventually successful in getting a TVI “on loan” from the Tennessee School for the Blind to come and work with us and our son through early intervention. Now three years later as those weekly visits in our home stopped (Finn now has a new TVI through a school-based program), I look back and know just how crucial having her support was for us. She taught us how to pick our son up without alarming him as a newborn, how to motivate him to crawl and walk, how to help him navigate his way around our house, how to use textured tape at the top and bottom of our stairs to alert him to their presence ahead, how to braille his books, what a pre-cane was, and so much more. She wasn’t there to teach my son — she was there to teach us and that’s exactly what we needed.
I know that not every parent or caregiver out there raising a child with a visual impairment knows that having the services of a TVI is not only critical, but their right. I know that not every parent or caregiver may be able or willing to fight for a TVI if they are not given one because of the energy and time it requires at a time when energy and time are scarce. I know many parents or caregivers who try to secure a TVI often give up because they are told it’s just not possible due to a nationwide shortage of these providers. I also know what it’s like to be struggling with acceptance of a diagnosis, to be on an emotional roller coaster and in the midst of a slew of seemingly non-stop medical appointments and just wanting for something to be easy. To not want to put up a fight.
When Covid hit, I was fortunate to keep my job in marketing, but work was slow and my frequent travel came to a halt. If there’s been a silver lining for me in this pandemic, it’s that I had more time with my children and more time to deeply self-reflect. I decided to start taking some classes online through the University of Kentucky in their TVI program. I wanted to learn Braille and potentially other information that could help me support Finn in the future. During class one night, there was a speaker from an amazing program in Kentucky called VIPs, or Visually Impaired Preschool Services. VIPs offers early intervention, family support, a preschool and a family resource center for all children in both Kentucky and Indiana born with visual impairments. I was blown away and kept thinking to myself how wonderful it would have been to have had a VIPs in Tennessee when Finn was born.
Soon thereafter I connected with my friend, Stacy, also the mother of a young boy who is legally blind. I started telling her about my classes and about VIPs, which ironically she already knew about and had even attended a family retreat there years before. Over the course of the next few weeks we started brainstorming about how we could make things better for families like ours in this state. We decided to take a chance, join forces, and do what we could to make things easier for the families who will walk this path behind us.
In October, Stacy and I founded Blind Early Services TN, also known as BEST, a nonprofit organization supporting families of children, ages 0-5, who are blind or visually impaired. And as you can probably guess, we are modeling ourselves after VIPs and other agencies in other states who have paved the way in supporting families of blind and low vision children in our country. We have been so fortunate that VIPs and so many others like them have been generous with their time and resources to ensure we get it right — lifting us up and pushing us forward so we can bring much needed comprehensive services to our state. We want the first words for families to hear after the often devastating words, “your child is blind” to be, “but there is a place to turn and it is called BEST.”
BEST currently offers three programs free of charge to families in Tennessee: BEST Together, our family support program; BEST Start, our early intervention program, and BEST Transitions, our advocacy and IEP support program. One day we hope to expand to preschool services too. In the meantime, I’m proud to say we have recently been awarded a three year contract with our early intervention system to provide direct services. What this means is that we get to work within the system that helped us greatly, but that we also get to help them fill the gaps that we learned first-hand existed for families like ours. We are grateful that the state recognized those gaps themselves and took a chance on a new organization run by two moms on a mission.
What can you do to help? Follow BEST on social media (links below). If you know of any families in Tennessee with children who are blind or visually impaired, ages 0-5, please tell them about us. If you know of any providers working with children with disabilities in the state of Tennessee, please tell them about us. And if you feel so inclined, donate. We want the BEST start for the families of children who are blind or low vision in Tennessee! Help us in our mission!
Only 10% of children who are blind are being taught Braille.
Only 30% of adults who are blind are employed.
85% of adults who are blind and know Braille, are employed.
Let that second statistic sink in. The current unemployment rate as I type this in the U.S. is 6.9%. Even during the current pandemic when people have been filing for unemployment at staggering levels, the highest the unemployment rate reached this year was 14.7%. During the Great Depression, unemployment reached the highest it has ever reached at 25%. For adults who are blind the rate is 70%! SEVENTY PERCENT UNEMPLOYMENT.
The first time I learned this, not long after Finn was born, I was floored. I still am. While there are surely many factors contributing to this horrifying statistic, I have no doubt that the one that looms largest is discrimination. I’ve heard tale after tale from those who are blind of applying for jobs that they are qualified for, often more than qualified for, only to be rejected or passed over for someone else simply because they are lacking vision or have low vision. Employers who encounter a blind applicant may assume things like, “this person isn’t capable of performing the job” or “this person will require adaptations I’m not willing or able to provide” or they may just have implicit biases under the surface that they aren’t even aware are there. As is true for so many people with a disability, the bottom line is blindness continues to be unfairly associated with incompetence. The key word here is unfairly. The fact is, people who are blind can perform most jobs that sighted people can and there is no such thing as a “blind person’s job”. Of course people who are blind can’t perform ALL jobs that sighted people can, but sighted people can’t perform ALL jobs either. There are blind people all over the world successfully working as architects, engineers, designers, physicians, judges, artists and scientists, among many other professions. As a sighted person, I can say with confidence I could not successfully work in most of these fields myself!
Technology has come far in recent decades, opening the doors for more opportunities for the blind community among others, but clearly disability biases remain or this statistic would not. So, what can we do? One misconception I hear a lot is that “there is no point” for those with low or no vision to learn Braille anymore. Yes, screen readers or audio books and other technological advances allow for all of us to “read” without sight, but that is not the same as being literate. And for anyone, being literate correlates with academic success, employment and higher wages. Taking a look back at the statistics I started with, 85% of those who are blind and who know Braille are employed! It is clear that this correlation of literacy and employment doesn’t just apply to print readers. So, it may come as no surprise that I’ve been exposing Finn to Braille since birth. We have tons of books for him that are Brailled and his TVI (Teacher for the Visually Impaired) recently made individual alphabet books for him that are teaching him how to recognize each letter by touch. We’re also working on exposing him to the Braille cell through 6-hole muffin tins that we fill with tennis balls to form different letters. Sloane has taken to both and we expose her to how her brother will learn to read all the time as well. I’ve also just completed a Braille class myself and am now able to Braille books, objects and other items throughout our house on my own using a Brailler (it weighs a ton and looks like a chunky old school typewriter and yet has become one of my most prized possessions). Ensuring my son is literate is the best way I know how to combat the staggering statistics working against him.
As for discrimination, I encourage all who are ever in a position of hiring someone to do your part to combat these statistics too. How? For starters, make sure your company website and hiring sites are all accessible so that those with visual impairments have equal access to job postings. Equal opportunity employment starts with the posting itself. Secondly, educate yourself on the multitude of technologies, adaptations and accessibility tools there are out there to support the visually impaired in completing any task. Adaptations are not hard to provide and are no different than providing an employee with software or a computer to do their job. Simply ask a visually impaired candidate, what tools would you need to effectively do this job? Third, attend White Cane Day events or other opportunities to meet more people in your community who are blind or visually impaired. One of the biggest ways we discriminate is through isolating or ignoring marginalized groups. Assumptions are falsely made when we don’t allow ourselves to observe, interact and learn from others who are different from us. Finally, and most of all, do not discriminate! It’s really that simple. Don’t make assumptions about anyone before you’ve met them or really given them the opportunity to show you who they are what they can do. If you aren’t open to hiring an applicant with a visual impairment, I’d say you are actually the one lacking vision. My bet is, you’ll end up gaining as much, if not more, from hiring the applicant that may require some out of the box thinking on your part than you could ever aim to imagine when writing out that job description!
I’m not easily offended. I’ve always said this and meant it. I think a big contributor to this is that my motto has always been to read between the lines and look at the intention behind another person’s actions or words, as opposed to the outward expression that may be out of alignment with what they truly mean. I still operate by this motto and it keeps me from being easily angered or hurt, but recently I’ve begun to explore the idea of intention versus impact. Yes, intention is key, but impact matters too.
Often times, we speak and are completely unaware or oblivious that what we’ve just said may be hurtful to someone on the receiving end. And more times than not, this is due to the fact that we’ve never had direct experience with someone or something that would alert us to that potential hurt. Since having Finn, I find myself triggered by a lot of common phrases that never even used to register for me as offensive. In fact, I know I’ve even used many of them myself in the past due to my own sighted privilege. Things like:
“You’re either blind or living under a rock.”
“Wake up and take the blinders off.”
“The blind leading the blind”
“Turn a blind eye”
“What’s the matter, are you blind?”
“If you didn’t realize ___, then you must be blind.”
“I was completely blindsided.”
Each of these phrases I’ve heard countless times from friends, from family, on television, or in books, all said, assumingly without a thought, because to them, they are just a joke or common phrase. Though these kinds of phrases don’t always offend me, you better believe I now notice them. Why? Because each of these statements implies that the word blind means ignorant, unaware, incapable, or to be living in darkness. None of which my child is. None of which other blind people are simply as a result of their blindness.
I did a little experiment over the last two weeks where I counted how many similar remarks were made to me, around me, on social media or on television that fell into this category. I counted 18 in a two-week period. That’s more than once a day! Think about the impact that kind of repetition can have. Think about the narrative that creates for the blind and visually impaired community. The same goes for any other marginalized community that is constantly subjected to misused, insensitive words or negative stereotypes.
My point here isn’t to suggest that I’m constantly offended or that these types of statements always have negative impact. And certainly, I don’t find the word blind to be offensive –it’s a simple adjective to describe my son, much like blonde-haired, tall or thin. Rather, I think we could all benefit from being a bit more selective and thoughtful with our word choices and in this case, if you’re using the word blind, to be careful that your intention is to mean “sightless” and not clueless. With something like “the blind leading the blind” that has been said a million times, we should stop and ask ourselves, is this really what I want to say and how I intend to categorize people who are blind? I don’t want anyone to equate blindness with ignorance or lack of awareness. My son is one of the smartest, most aware kids I know, not in spite of his blindness, but I believe, in part, because of it. From what I witness, he is able to focus so much more than I am on the information he receives possibly because he is free of so many visual distractions. Regardless of the reasons, it would be supremely inaccurate to categorize him as clueless.
I also don’t mean to suggest that we should all walk on eggshells around each other and be fearful to speak freely. I don’t want anyone to censor themselves around me. I do think it’s important, though, that when someone says something that may be unintentionally hurtful to us, or someone else, that we speak up so we can collectively help change a narrative that has been perpetuated over time and use. In other words, if instead of brushing off negative or mischaracterized language as unintentional and ignoring it, we communicate to those around us a better way of phrasing it, then maybe these phrases don’t become quite so commonplace and their negative impact is lessened. So, I’ve decided that impact matters just as much as intention — and ensuring that those around us are aware of the impact of their words, whether intentional or not, is as important as being aware of our own.
I once said in an earlier blog post, and have said many times to friends and family, that one of the things I’m thankful for regarding Finn’s blindness, is that he can’t see skin color and thus, won’t judge people based on color or other appearance-based information. I now know that this was both naïve and wrong of me to believe.
Following George Floyd’s murder and the ensuing protests over the past few weeks, I’ve been doing a lot of research, reading, self-examination and listening. One thing, among many, that has really been a lesson for me is that “not seeing color”, something I’ve more than once been proud to claim, is not the goal in achieving racial equality. Rather, the Black community and other racial minority groups want so badly to be seen. The key is, they want to be seen, they want their differences and struggles to be known, AND they want to be treated fairly and equally. I now recognize that ignoring one’s race is only perpetuating systemic racial prejudices, as well as the idea that being white means being normal.
This has been a real shift in perspective for me. And this shift in perspective has taught me that I need to adjust some of my parenting tactics as well. With Finn, I work to teach him colors by saying “grass is green” or “the sky is blue” so he can begin to understand that objects in the world have distinct differences beyond texture, taste or sound. What he imagines green or blue to be in his mind is known only to him, but I want him to know that the world is full of different colors and that diversity is a wonderful, beautiful thing. What I’ve failed to do is point out to him that people come in different colors too. I’ve never once mentioned his skin color or anyone else’s to him, and this was purposeful. I thought I was doing the right thing — that I was allowing him to view all people (or characters in the books we read) on an even playing field and to make his own judgments about them based on only their words, actions, or his interactions with them. I no longer ascribe to the belief that being “color blind” is doing him, or those who may be treated unfairly due to the color of their skin, a service. The reality is we don’t reside on an even playing field and my child, blind or not, is going to figure that out.
A friend of mine told me a story recently of her 10-year-old daughter asking, if she ever wanted to marry someone of a different skin color than her own one day, would my friend approve? My friend replied something along the lines of, “Of course! As long as he/she treats you well, then you marry whomever you want!” My friend is one of the most kind, non-racist people I know, and yet her daughter still felt the need to ask. Why? Because my friend has remained mostly silent on the topic of race with her child, just as I have with mine, in an effort to not draw attention to it or make it “an issue.” Despite this, her daughter has still deduced somewhere along the way that an interracial relationship might not be acceptable. She didn’t automatically know that her mother would approve. This is the difference in being non-racist and anti-racist. We have to talk to our children about racism and we have to tell them that we are against it in every way, and what our role is in not perpetuating it. Luckily, my friend’s daughter asked the question and didn’t make her own assumptions. But many children won’t ever ask. In the absence of direct conversation, our children are left to make their own assumptions or gather information from other sources that may not be aligned with the values we hope to instill in them. We have to tell them.
My blind son may not see differences with his eyes, but he will see them. He will learn them just like he learns everything else. In fact, in part of my research recently I discovered a study from 2015 that found that although it may take blind people longer to categorize people by race, they often still develop racial stereotypes. As he grows up, Finn is going to be out in the world more, encountering new people and places other than those in the small circle he lives in now. He’s going to learn about the world from many sources other than us, or the things we present to him, and I never want him to mistake my silence on the topic for underlying prejudice.
We can’t protect our children from the prejudices that they will encounter, whether it be through classmates they meet, books they read, music they listen to or television they watch, but we can talk openly with them, make our beliefs known and control the narrative as much as possible. It’s on us as parents to make our children know from the start that there are differences of all kinds, that we see those differences, that we celebrate those differences, and that we do not support racism, sexism, ableism or any other “isms” of any kind. Ignoring these topics does not make them go away, does not make them a non-issue, and does not serve those on the receiving end. We have to tell them.
So how do we start? For us, it’s starting with direct dialogue and representation in our home. Recently we started explaining to Finn what his skin is, that it has a color, that everyone has skin, but not everyone has the same skin color. We talk about the people and other children in our lives who have different skin color than us and how these differences make the world a better place. We also took stock of Finn and Sloane’s book collection and unsurprisingly realized that it is overwhelmingly representative of us and people like us. Immediately we ordered a collection of children’s books reflecting races, histories, cultures and skin colors other than our own to read to Finn and his sister.
My son has his own physical differences and I want people to see him for exactly who he is – a sensitive, sweet, blind boy while also treating him the same as they would a sensitive, sweet, sighted boy. I’ve never wanted his blindness to be ignored, unseen, or not talked about. In fact, I’ve often hoped that there are parents out there reading books to their sighted children that include representation of little boys and girls holding a cane or reading Braille. And I hope they are telling their children to be kind, fair and to listen to kids they encounter in the real world like Finn. Why didn’t I realize sooner that the Black community would want the same?
Finn is not yet even 3 and Sloane not yet 1 so we know there is a limit to what they can understand right now, but this is only the beginning. We plan to teach our children about not only color differences, but the different lived experiences (good and bad) that often come with them, just as we will teach Finn about his own. We will teach our children to not just be non-racists, but to be anti-racists. We will teach them that the word ally is a verb – with it, there must come action and that silence is inaction. We will teach them to stand up and say something when they encounter injustices in the world. We will teach them that events like the murder of George Floyd are not just single events where “one bad person did a bad thing” – but, that there are institutional and systemic prejudices, alongside inequality of resources, at the root. There’s much more work to be done, definitely including my own, but this is a starting point for how we hope to move the needle with our children and make sure they don’t go into the world color blind.
Below is a link to several books for young children to help start the discussion about race. I’ve also linked an article about how to choose the right anti-racist media for your children. Finally, I’ve linked an episode from a new series on Instagram called Uncomfortable Conversations with a Black Man that briefly addresses the issue of color blindness.
I don’t think I realized just how dependent we are on the “village” that helps us in raising our children until we were hit with a global pandemic. Over the last two and a half years we’ve worked, advocated and carefully navigated how to get Finn the services and support he needs to thrive, to meet his full potential and to overcome the challenges with which he was born. We enrolled in Early Intervention. We fought for access to his TVI (vision therapist). We pushed through the early transition struggles at his preschool to get him comfortable and participating. We identified the need for speech therapy, switched therapists and increased the frequency before finding the right dynamic. We found the music class and teacher that fostered his love for music, and made him comfortable enough to participate. We employed three nannies before finding the one who was the perfect fit for Finn, Sloane and our whole family. Each of these steps brought us to a place where, as of just a few months ago, we were finally settled, happy and truly seeing progress.
In the blink of an eye, as I’m sure so many others have experienced and felt recently, our team and our routine in which Finn so thrives was halted. All at once there was no more school, no more vision therapy, no speech therapy, no music class. It felt like we were alone. And, as I do best, I began to worry. What will happen to Finn’s progress in speech if he goes without therapy for months and months? How can we come up with activities and lessons at home to match what he was getting in school? How can we foster social interaction when we’re quarantined at home? How will Patrick and I fare without the vision therapist’s weekly lessons that help us adapt and challenge Finn to succeed in a sighted world? How will we balance work and the children if our nanny can no longer come into work? My son is only two and his sister only 9 months — I can imagine that the worry of parents of older children suddenly out of school, and especially those with special needs, runs even deeper.
The good thing about children is that they are resilient and adaptable. I’m not even sure Finn has noticed that his routine has changed or that he hasn’t left the confines of our house or yard in 8 weeks now. He also loves being at home where he’s familiar with his things, the rooms, the people and the noises. But, what I’ve learned about myself and all of those that our family relies on, is that we are all adaptable too. We have to be. It’s a true cliche that you don’t really know your own strength or capabilities until the challenge is right there in front of you.
Within two weeks of the “safer at home” orders here in Nashville, our music class went virtual and we now attend from our living room every Friday morning. And, honestly, Finn loves it more than ever. He gets to sing the songs and play the instruments without the added distraction of the noise of other kids in the room. Shortly after that, our speech therapy sessions went virtual as well. Finn’s school (where he receives his therapy each week) transitioned to tele-health services. Finn struggles to stay engaged for very long so I do look forward to getting back to the in-person sessions, but at least we are given examples of things to work on with him at home and he isn’t left with no therapy at all during this crazy time. Our TVI can’t come to our house every week like she used to, but she calls each week to check in and offer things for us to work on at home as well. Finn’s preschool classroom hasn’t gone virtual and we are definitely missing the socialization aspect, but the school is sending out age appropriate activities and lessons to try at home each week as well as recorded story time videos. We are so fortunate that we have been able to keep our nanny who is still coming to help with the kids while we work. We had a discussion at the start all of this and she graciously opted to quarantine with us (she only comes to and from our home). I honestly don’t know how we would have kept our sanity these last two months without her. (Side note here — I give a special kudos to her for not batting an eye when I decided that potty training Finn would be a great idea to do during quarantine. We are on day 13 of a 3-day plan if that tells you how well it’s going. I don’t know if the fact that Finn has no real reason to care about the cute characters on his big boy underwear, can’t see his Dad or I going to the bathroom as a model, or can’t gain feedback from seeing his pee or poo as it hits the potty (IF it hits the potty) is playing a factor, or if I just have a very stubborn child — I honestly think it’s a combination of all — but yes, a special thanks to our amazing nanny for enduring this and being just as determined as I am to see it through and ensure Finn doesn’t go into high school in diapers.)
I quickly realized we weren’t alone — we had a QuaranTeam.
I’m trying very hard to focus on the silver lining in all of this which includes more quality time with my husband and children, less work stress and no work travel, and so importantly, this realization that our support system is there for us even in the craziest of circumstances. Life in quarantine with two young children has its difficulties (I’ll admit I’ve had more than one occasion of sudden tears shed and wishing we could opt for some screen time for a break), but, life in quarantine is hard for everyone. There is no script for this and yet, we are all figuring out how to play our part. A friend recently sent a quote that essentially said working, parenting, teaching, being a therapist (among other things) are all full-time jobs in their own right. Right now, many of us are trying to do all of them at the same time. It’s just not possible! We need to continue to rely on our support system in new ways if we can. And most of all, we need to cut ourselves some slack and recognize that we are all doing our best during this unique, trying and unsettling time and, that our best is enough. Our kids will come out ok. We will come out ok. And we will be stronger for it, I’m sure.
I write this post for one reason and that is to say THANK YOU. Thank you to all of those in our QuaranTeam who are helping us to keep it together. Helping to maintain a sense of normalcy for our family. Helping to educate, care for, treat and entertain our children. Helping us to stay sane and stable. There are so many on the front lines of this daunting situation who are working tirelessly, and that includes all of the teachers, therapists, childcare workers, and support groups who are finding new ways to stay connected with the children and parents who need them. I’m beyond grateful for ours.
Finn sees his retinal surgeon once a year now for a simple checkup to ensure there is no change in eye pressure or condition. We’re no longer looking for improvements from his surgeries (i.e. shadow or light perception) as we’ve accepted that the surgeries were not successful on that front. I took Finn for his yearly appointment in December and Dr. S said that everything looked status quo and there was no cause for concern. As he was finishing his exam, he mentioned that there is a new genetic test available from a company doing research in gene therapy. This particular test is for 250 inherited retinal diseases. I was excited to hear that in just two years there was already a new test and that research continues for those with retinal disorders. I asked for more information and learned that in order to run the tests, Finn would need to either be subjected to a blood draw (in some cases for kids his age this requires sedation) or be able to spit into a vial for a saliva sample, which he cannot yet do. He went on to explain that this tests for 250 genetic diseases out of a potential 100,000+ so to keep in mind that it is still like looking for a needle in a haystack. Hmmm. Dr S. said it would be something to consider in the hopes of getting a diagnosis, but Patrick and I would need to weigh whether it’s worth putting Finn through the pain to run the test now or wait a year or two until they can take a DNA sample by saliva. In his words, how aggressive do we want to be in our search for answers?
A few weeks later I picked Finn up from his speech therapy session at school which he has once a week. His speech therapist asked to speak with me about her observations of Finn since she’s been seeing him over the last four months. She told me that she believes he has a neurological speech disorder called Childhood Apraxia of Speech. Apraxia is a motor speech disorder where the child knows what they want to say, but has difficulty producing the motor movements to connect sounds or pronounce words correctly. For example, Finn can say “mmm” and he can say “ooo”, but he cannot say “moo.” Unlike developmental speech delays, Apraxia is not something a child can grow out of and there is no cure. However, it can be treatable and manageable with a lot of therapy, practice and hard work depending on the severity. We had noticed issues with Finn’s speech, of course, which is why we have him in speech therapy in the first place. I often serve as Finn’s interpreter with teachers, grandparents, or others who don’t see him as often as we do and haven’t learned the funny way he says the words he’s trying to say. However, I think the parent interpreter role is pretty normal for most two-year-olds so I assumed we were dealing with a typical delay that would resolve itself in time.
Unfortunately, it appears we are dealing with another atypical issue. Honestly, to hear the words “neurological” and “disorder” out of the blue again were a punch to the gut. On the flip side, I did not panic, I did not cry, but I’d be lying if I said that I did not worry. The worry set in immediately, in fact. Will therapy really help? Will my son be challenged with being both blind and unable to communicate clearly? Am I doing all I can to help him succeed in life? And at the root of it all, the big one that never really goes away – does this mean that Finn has a genetic disorder or syndrome after all, and are there more challenges to come? A new diagnosis meant his blindness was most likely not just an anomaly — what are the chances that he just happened to be born with both blindness and a neurological speech disorder and the two not have any connection to one another?
With these two encounters with Finn’s medical team we were faced with two questions – what do we do to start treating the Apraxia, and do we get more aggressive with our search for an answer to what Finn may have?
I started doing research online and it became apparent that increased frequency and duration of therapy is the main recommendation for children with Apraxia. The fixer in me (i.e. the mom in me) immediately jumped to, “OK, we’ll do therapy five times a week instead of one!” I even had a moment of researching how to get my own degree in Speech and Language Pathology to learn the techniques to help him myself. Of course, I quickly realized that by the time I finished all of the education and training required, Finn would likely be on his way to high school. So, that was out. I reached out to our Early Intervention Coordinator to tell her what was going on and requested more therapy. She said she’d be happy to add a second day per week provided our therapist has an opening. Only one extra day, I thought? Is that enough?
I then met with Finn’s Speech Therapist as well as his TVI (Teacher of the Visually Impaired) to talk through it all. I was in my warrior mom mode for sure. But after speaking with them, Patrick and a close friend, I realized I needed to take a step back. Yes, I want to help my son and do everything I can for him, but I also don’t want his entire childhood or life to be about his blindness or his speech issues or anything else that may come our way. I don’t want him to live his life in therapy working so hard that he’s never able to have fun and just be Finn, just be a kid. Additionally, the same goes for us. We don’t want to spend our entire life focused on the things that are so-called “wrong” with Finn when at the end of the day he is happy, healthy and thriving. We all need to find a balance of using the support and resources at hand while also just living and enjoying life. After taking in all of the recommendations, we moved forward with increasing his speech therapy to two days a week for now. We’ll give it until he turns three to see how much progress we’re making and reevaluate the need for more speech therapy then.
Since Apraxia is hard to officially diagnose in very young children like Finn, we did take one additional step by getting a hearing test to see if there might be hearing blockages causing or exacerbating the speech issues. We took him to Vanderbilt’s pediatric hearing and speech center where they ran three panels of tests that all ended with roadblocks. For the first test they played different sounds from different directions that Finn was meant to turn his head toward if he heard them. Two problems – 1) the sounds and responses are meant to be supported by visual cues such as pictures or video which obviously won’t work for Finn, and 2) he wouldn’t stop talking, crying or fidgeting long enough to listen. The second test was meant for three-year-olds and older, but they tried it anyway. The doctor spoke simple directions at different volume levels to see if he would hear and follow them. Again, he’s only two so what two-year-old do you know follows directions well? That was a bust. The final test was done putting wired plugs in Finn’s ears to detect vibrations and other physical reactions to sound. Finn kept ripping the plugs out and eventually the doctor determined that due to recent colds, both of Finn’s ear drums were too blocked with fluid to make the test effective anyway. After a two-month waiting period to get the test approved and booked by TEIS (Tennessee Early Intervention System), it was fruitless and just triggered more stress for all three of us. We will try again when we’re ready.
As for the new genetic test, of course we want answers, but at what cost? Even with the Apraxia development, the haystack has not gotten any smaller. According to Dr. S who researched it at length for us, there is no clear correlation between retinal detachments and Apraxia that would point to a more narrow panel of disorders for testing. When Finn was just days old, we started out on the quest for answers via appointments with specialists, the flight to Detroit for a second opinion, two surgeries under anesthesia, an MRI, blood tests, two rounds of genetic testing and just recently the hearing tests. Now two and a half years later, it has all resulted in no clear answers. That doesn’t mean we’ll never find the answer, but we don’t want to spend our life focused on finding one and we definitely don’t want to put our sweet boy through any more pain or struggle than necessary. Having a diagnosis could help us with knowing what might come our way in the future, but all of our medical team agree that it wouldn’t change our treatment plan. There is no magic pill to cure blindness nor one to cure Apraxia so we are doing all that we can for him. Knowing that, we are at ease with taking things as they come, at least for now. I’m sure we will revisit the haystack and do more tests down the line when they are easier for Finn, but in the meantime we continue with a healthy balance of therapy and letting a kid just be a kid!
From a very young age I was obsessed with pictures. My grandparents kept those old photo albums with the sticky film pages covering polaroids on their coffee tables, and every time I was at their house I’d flip through them so much that I’d pretty much memorized the order of each one. I loved looking at old photos of my parents, grandparents, siblings and myself as babies and beyond. I loved asking my parents or grandparents to tell me all about that day or that moment. It captivated me.
My obsession continued throughout my young adulthood as I became the designated photo journalist of my friend group. In high school and college I rarely missed documenting a single moment. (This was to a fault, for sure, as evidenced by one too many pictures I have of my friends and I in college posing with solo cups and half-empty bottles of Boone’s Farm. I am thankful every day that there was no Facebook or Instagram back then and that these photos are safely stored in my home and not online for all to see.) I look back at all of my photos now and often laugh, sometimes cry, but a lot of the time think, “Geez Alison, just enjoy the moment and stop taking so many damn pictures!” I’m sure many of my friends were thinking that at the time too. I know now that not every single moment needs to be captured, but at the same time I’ve always loved the fact that I have so many photos to share with others when I reminisce about the “old days”. I always imagined doing just that with my own children and grandchildren one day.
The irony of this, of course, is that I now have a son who is completely blind and cannot see photographs of my “old days” nor of his own. For him, pictures aren’t worth a thousand words like they are for those of us who are sighted. I assume he will have little to no interest in sitting with me as I scroll through my online photo albums the way I did so fervently by hand at my grandparent’s house. This has changed the way I think about pictures and picture taking.
Don’t get me wrong, my phone is still full of about 10,000 photos of my children like any other proud mom and I love showing them off, but, looking through them recently had me thinking a lot about how to create that same photo album experience for Finn. If I’ve learned anything from him, it’s that blindness doesn’t equal incapability, it just requires adaptability. So, I found a way to adapt. I recently started a digital journal specifically for Finn. Since descriptions are essential to bringing any story to life for him, I’m using the power of words to document our memories as he grows up. The same way my grandmother would describe the moments we lived in those old photographs, I’m going to describe moments to Finn in a journal. I’m also including pictures to which I’m ascribing a detailed image description that will tell him who is in the picture, what they’re wearing, what they’re doing and when/why it was taken.* It will be his own version of a photo album or memory book that he can hopefully enjoy the way I did for years to come.
Another piece to this new photo dynamic is that Finn can’t pose for a photo the way we all are trained to do. Saying, “look at the camera” or “cheese” is lost on him. Any posed photos with Finn consistently show him with his head down toward the floor where it almost always falls naturally. And when I say, “Chin up, Buttercup!”, he lifts his head so high it lands equally as off-target. Posing for pictures has become a point of frustration, I’ll admit — not so much when Patrick or I are behind the camera since we’re now accustomed to it, but when others are. Regardless of whether the person taking the picture knows Finn is blind or not, inevitably they repeatedly call his name to try to get him to “look” at the camera. “Finn, Finn, up here! Look up!”, sometimes even with a snap of their fingers. It’s not that they’ve forgotten Finn is blind, many times this happens with our own family. It’s just what we’ve all naturally been trained to do — to pose and stare into a camera smiling, in order to get that “perfect” shot. The so-called perfect, posed image just isn’t going to happen right now, probably not for many families with unpredictable two year olds, but certainly not for us. I’m sure in time I’ll be able to teach Finn how to lift and turn his head in the right direction, but how much do I want to worry about this? Why is a posed photo so important?
Since my excitement around photos will likely always be a part of me, I’ve learned to not only accept, but embrace the imperfect photo. I welcome photos of Finn with his head down or way up since that’s exactly who he is. I now opt more for candid shots instead of posed ones in order to catch him with a real smile in a real moment. I’ve accepted that our annual holiday cards may not fit the traditional mold. I have to say I’m thankful for this — yet another lesson gained from my son. I needed to let go of capturing every moment or the perfect pose and just enjoy it instead. I needed to realize that what matters most about photos is the memory behind them and capturing reality, not some ideal result. As soon as I let that go, I was able to capture many perfectly imperfect shots to add to Finn’s journal. I can’t wait for him to listen to it one day!
*I’ve learned that image descriptions in the blind community are of great importance — describing the details of a social media photo rather than only offering a simple caption allows a visually impaired viewer to get so much more out of the experience. Thankfully most sites now offer what is called alt text — this is essentially a worded description of any visual content for those who can’t see it (available for anyone using a screen reader device). Pretty cool right? Yes, I am thankful that social media didn’t exist back in my youth, but I’m beyond grateful that technology has come so far for Finn and others like him. One issue with alt text, though, is that computers can only be so accurate and descriptive on their own. This is where we, as online posters, need to help out. Facebook, Instagram, WordPress and countless other sites now all have alt text options that make it very easy to write your own descriptions of your photos (I added alt text to each of the photos above). They don’t need to be long — just specific and descriptive. The next time you post public, visual content online I encourage you to look for the alt text option before you post and add a quick description, or even add one beneath your caption. It’s a simple thing we can all do to make the online world more accessible and enjoyable for the blind community! (For more information on how to write and post alt text or image descriptions, a quick Google search will offer tons of pointers and examples.)
Last time I posted I shared with you the wonderful news that we welcomed our baby girl, Sloane. She is now two months old and what we’ve learned over the last two months is that parenting two under two (well, Finn just turned two) is HARD! So hard in fact that Patrick and I hit a breaking point not long ago. He had just returned from a trip to see Ariella in Australia and was immediately pulled from the emotional stress of saying goodbye to his seven year old into the throws of chaos with our other two, a naturally needy newborn and an often tantruming toddler. Add to that a very tired mama who’d been alone with those two children for a week and you have a recipe for disaster. It was a perfect storm that resulted in a huge fight that neither of us handled our best. There was screaming topped with tears finished off with a long dose of avoidance and silent treatment. Was this normal? Were we doomed? We’ve since rebounded and settled back into the semi-routine we’ve established over the last two months, but for a moment we both cracked and in that moment it felt like we were failing at this whole parenting thing.
In the midst of the stress, tears and feeling of complete failure, I panicked and called a close friend to come over and talk — a friend who has three kids and had been through the phase of parenting a newborn and toddler at the same time once herself. As we chatted for a while on my front porch she finally looked at me and said something like, “You know I’ve been there, but what you’re going through and what most of us go through, isn’t quite the same.” She explained how when her first child was a toddler he could do a lot to entertain himself without needing her constant supervision or help, and could often help her with certain tasks by the time the newborn came along. She followed with a question, “Have you and Patrick ever allowed yourself to recognize that Finn isn’t a typical toddler and that you are under more than a typical level of parenting stress because of that?” My gut reaction was to say, “Oh, all parents have it hard and we’re no different!”, but I stopped myself. Her perspective really threw me so I took some time to ponder her question. We give so much focus to Finn and his special needs and behavior, but I’d never really taken the time to examine how those needs and behaviors impact our parenting.
Patrick and I both strive to make Finn feel “normal” and know he can do anything he put his mind to, with certain adaptations. We never want him to feel incapable and we do our best to ensure he’s treated the same as any other child his age. We also never want to convey a message of “poor Finn” or “poor us”. As a result, I continually find myself saying things in conversation like ” Finn is doing X … which is typical of any kid his age.” Or, Finn is doing X … but I don’t think that’s because he’s blind, that’s just because he’s 2.” And I do think that’s often true, but my friend’s question was a reminder that even though Finn has all the usual toddler traits such as tantrums, throwing food and speaking in his own funny language, he also has the unusual challenge of being blind, which means parenting him isn’t always typical, and may just be harder than we sometimes want to admit.
I took a trip last month to spend a long weekend with some of my closest girlfriends and their children. I took Sloane with me, but left Finn home with Patrick. The age ranges of the other children there were from one to three. I watched my friends’ kids over the course of the weekend and we talked a lot about the things our toddlers are doing – speech, behavior, eating, etc. — the usual parent talk. Every child is different so I tried hard not to fall into the trap of comparing milestones and development – I learned early on that this just doesn’t serve anyone well. Instead, I found myself observing the parenting tactics of my friends in the hopes of leaving with some new tools and tricks to use at home. (Can you tell we’re going through the terrible two’s??) It ended up being a stark awakening that a lot of the tools they can use with their toddlers just don’t work with Finn. For example, a quick episode of Daniel Tiger kept their kids quiet for a half hour while they showered or prepped dinner. Or, my friend pointing to a bag in the corner while saying “grab that for me please” alerted her three year old to help her mom. On the beach or at the park, the kids easily found something to entertain themselves without any direction, explanation or hand holding by their moms. When simply asked what they wanted, the kids could point to exactly the food or toy they desired.
Finn can’t watch an episode of Daniel Tiger or anything else to give us a quick reprieve when we need it. This is especially hard on airplanes or road trips. Finn can’t point to things or locate what he wants on his own (and currently can’t say what he wants for the most part either) so we’re constantly asking questions such as, “Do you want your keyboard? No. Do you want your puzzle? No. Do you want a book? No.” And so it goes until we hit the magic sign for “Yes”, sometimes 30 questions later. If I were to point and say to him, “hand me that green bag over there”, “green” has no meaning for him, and “over there” has no meaning for him. If we’re at a park or a beach, Finn needs physical guidance and verbal direction just to know what there is to do, so we walk him around to the different options until he makes a choice. In his weekly music class when the teacher brings out the instruments to choose from, the other kids hop up immediately and race to the center of the room to select their chosen one. For us, I often feel stares from other parents who don’t know Finn is blind, probably thinking I’m an overprotective hovercraft parent, as I guide him to the center to make sure he doesn’t bump into the other kids on his way and then quickly explain what each instrument is until he chooses one of the few left on the floor. Sure, we can take shortcuts by taking him straight to the slide and not telling him there are monkey bars. Or by choosing an instrument for him and not telling him what others are on the floor. Or by getting the green bag myself which will take half the time. But when we do, we’re robbing our son of the same experiences other kids his age have and of learning about the world.
We try to balance leading Finn and guiding him with trying to build his independence and knowledge, and all of that takes time and effort and more so than it would be for any other sighted toddler. It is exhausting! Yes, we adapt and have figured out our own set of tools and tricks, and yes it will get easier as he gets older and can communicate more but, I have to admit it’s also really hard sometimes and I imagine new challenges will begin to replace some of the current ones.
Finn was my first born and I’ve never known any other way of parenting or toddlerhood than what we have, but experiences like that weekend away or in music class when I’m around other parents and their toddlers really open my eyes (no pun intended) to our parenting differences. We have a special needs child which means we aren’t just parents, we’re special needs parents. Thankfully that talk I had with my friend on the front porch that day has allowed me to give myself grace, and the permission to recognize that those differences sometimes make parenting for us extra hard. I know there are parents out there who have it much harder than us and for those who do, I hope they give themselves the same grace to recognize that they have it extra extra hard. Does this mean I give myself permission to feel sorry for myself? Absolutely not. I could not be more lucky to be Finn’s mom and wouldn’t want it any other way. But to be the best parents we can be for him, we need to recognize and accept the added layer of parenting stress we’re under. Anyone with very young children is sure to hit a breaking point along the way, is sure to scream and want to run some days. If you’re not then I’d say you’re a unicorn. But for special needs parents, that breaking point may just be in closer range many days. Maybe we’ll hit our breaking point again tomorrow or maybe it will be a while, who knows. But when we do, this time I’ll cut us some slack and give us both the grace of believing we’re doing our best and aren’t failing as parents, we’re just having a momentary tantrum and it will pass.
I mentioned in my last blog post that one of the biggest challenges for us with Finn thus far has been socialization. He’s not even two years old yet, but play dates with other babies seem to start the moment our kids are born, as you are immediately thrust into the world of Mommy and Me classes or Moms social clubs the second you add ‘Mom’ to your identity. If you’re a stay-at-home mom, these opportunities are endless. If you put your child in day care, socialization is a big built-in advantage. For us, we decided pretty immediately after learning of Finn’s blindness that we would start with a nanny instead. Both Patrick and I work from home so we felt this was the best way to allow us to be involved in all of Finn’s appointments, therapies and day to day development without either of us putting our careers on hold. This has meant that socialization is something we have to actively seek out for Finn on weekends, days off or while in his nanny’s care, and it hasn’t been easy for any of us.
As an infant, there aren’t too many glaring differences between a sighted baby and a blind baby — the lack of eye contact is about it. But, as that child grows into a toddler the differences become much more apparent, never more so than when Finn is side by side with a sighted peer. We’ve done the play dates, had friends with their kids over, and taken Finn to group activities such as music class, tumbling class, and story time. What happens almost every time is that Finn gets overwhelmed by the noise of the other children and becomes very clingy. He can’t see what the other children are doing or playing in order to create a motivation to join in, while the other children are busy playing and too young at this point to understand why Finn is sitting alone with his head down and back turned to them. This makes our job that much more difficult – we have to constantly work to encourage Finn to engage, or to explain Finn’s blindness to the other parents or instructors, in the hopes that they’ll likewise encourage the other kids to interact with him. There have been times where I’ve just given up and left the situation, Finn screaming or clinging so hard to my chest that his nails have drawn blood. But, I know Finn can only overcome his feeling overwhelmed in large groups if we keep trying. He’ll have to learn how to effectively interact with his peers at some point so the earlier we encourage it the better.
I’ve had more success with Finn playing one-on-one with children rather than in groups and with older children who can understand Finn’s blindness than with those his own age. I have to say I’ve been blown away by the patience, kindness and interest older children have shown my son, in fact. And for a special needs mom who worries about future bullies, this has made my heart so full and eased my fears more than once. I’ve also learned that the more we expose Finn to the same people or settings, the more relaxed and comfortable he becomes. Of course he’s most comfortable in our own home which means having people over to our house is the best case scenario, but with music class, for example, he’s been going since he was an infant (huge thank you to my dad and stepmom who have gifted these classes to Finn since day one to encourage his love of music). The classroom, the teacher and the general format of the class is always the same. So when I say, “Finn, today we’re going to music class” he knows what I’m talking about and doesn’t protest. Even once or twice I think he’s been happy about going and embraced it- a huge win!
Our TVI (Teacher for the Visually Impaired) recently recommended we mimic this every day by laying out a weekly routine for Finn that includes one outing per day that always falls on the same day of the week. We’ve just started trying it — Monday is park day, Tuesday is tumbling class, Wednesday is story time, Thursday is an outing to the store or other errand, and Friday is music class. We’re hoping the routine and knowing what to expect each day will get Finn more comfortable with encounters with people outside of our home and with group settings with other children.
Finn is no longer a baby and the only way for him to truly learn about the world is to get out in it — to explore, to engage, to interact. This is true for any toddler, but we’ve realized now just how important socialization is for our very curious but sensitive blind toddler as talking, hearing and touching are his lifelines to that knowledge of the world. We can only teach him so much at home.
So, we made the decision last month to enroll Finn in a preschool two days a week starting mid-August. We found an inclusive preschool close by that operates under a 60% typically developing child to 40% special needs child ratio. They have a full- time onsite staff of therapists which means Finn’s speech and developmental therapy can be done in house on the days he is there, and his TVI can do visits at the school in addition to our home. They also have a sensory room that Finn will love. We toured the school last month and it seemed to be the perfect solution to helping us all work through the socialization challenge. Of course, I know the adjustment is going to be tough both for Finn and for me. We’re both accustomed to our routine in the house and the flexibility to be together on a whim any time of day. But, as all parents who send their children off to school for the first time know, it’s what’s best for our child – we can’t shelter and coddle him forever as much as I’m tempted to do just that. So cross your fingers for us that Finn will learn how to engage with other children, that other children will be kind and engaging with him, and that his mom doesn’t fall apart at the seams with worry.
We’re also pleased to announce the arrival of Finn’s new live-in playmate and eventual socializer, baby sister Sloane Christine born on 7/11/19. We do not know for sure yet, but at first examination in the hospital and pediatrician’s office Sloane’s eyes and vision appear to have developed normally. We’ll know for certain next month after an exam with Dr. S. – we just want to know for certain so we can be prepared.
I am so excited for Finn to have a sibling under our roof and to watch these two grow together. For now, Finn is beyond uninterested. He shakes his head no when he hears his sister and refuses to hold her. So, things are just as we’d expect having two under two! For now we are patient and letting him adjust to his new housemate on his own terms. We remain hopeful that he’ll soon realize she’s part of the routine, not going anywhere and he will embrace her too!