I have found that I learn so much through conversations with other people. I’ve mentioned my friend, Sara, before. She is a fellow School Psychologist and a dear friend who currently lives in New Zealand. In one of our conversations, she started telling me about perspectives that she has learned from the Māori people.
The Māori people are the original inhabitants of New Zealand, settling there prior to Europeans coming to the island. The Māori culture centers around the whole community and prioritizes collectivism. In their current work with people identified as having a disability, their core principles center around people achieving a good quality of life and wellbeing, to participate in and contribute to te ao Māori , and to participate in their communities as other New Zealanders are able to do. (health.govt.nz)
In talking to Sara, she shared that centuries ago, when a person of Māori descent was identified as having a disability, their family would pray to the Gods, thanking them for this gift. They believed that when someone had a disability, they were meant to heighten and specialize in another sense, making them special people.
This story resonated with me. Often society focuses on what people with disabilities cannot do. However, what if we viewed them like the Māori? In Luci’s case, her cognitive functioning is measured to be lower than someone else her same age. However, due to this difference, I can see the many strengths that she has heightened. She has more heart, love, acceptance, and persistence than the “average” person.
In my work, I push for more “strength-based” focus in education. However, this goes deeper than that. This isn’t just about mentioning some strengths or what someone can do that is “typical”. This is about fully appreciating the unique gifts that each of our students bring to their community and focusing our work with them not on remediating skills towards some norm but on channeling their strengths to help them fully participate in society. Their happiness and success is measured on what makes them happy and how they contribute in their community, not on a societal set of norms.
Luci has already changed my world with her love, acceptance and persistence. She is our gift to be celebrated and thankful for.
I remember when I started this journey, I went for a walk with a good friend of mine, Leia, who had an older daughter who also had been identified as having a disability.When I’m able to find space to talk to other parents who can identify with what I am going through, it is like food for the soul.
On this particular day, I asked about any advice she had. Something she said that stuck out to me was to be supportive of Khloe, Luci’s sister. She said siblings of children with disabilities have their lives change too, so make sure you pay attention to them. This wisdom has played in my mind countless times since.
Just like this has been a journey for us, it has been a journey for Khloe too. Sometimes when I try to explain this to others, they will respond from a well meaning place of support. They will reassure me that all siblings can be jealous of attention or that all older siblings get annoyed with younger siblings. Which is true. And Khloe’s experience is also impacted on top of that with being a sibling of a child with a disability.
Recently, Khloe and Luci were enjoying the summer sun while playing water games with neighbors. At one point, the sisters that they were playing with wanted to do a routine in the sprinkler and have the mom’s judge each sibling pair. Khloe became very quiet and decided she didn’t want to participate. After the neighbors performed their routine and Luci did a little dance on her own, they all started to play together again. However, Khloe and Luci were starting to bicker with each other. They were both upset so we took a break from play.
Khloe went inside and started yelling. I tried to calm her down when out of nowhere she burst into tears and the real reason behind everything came out.
“Mom, doing those routines wasn’t fair! Why do I have a sister with a disability? The (other sisters) can plan a routine and perform it together and I can’t. They laugh together and did the scavenger hunt together and I can’t do those things with my sister! What about when she goes to middle school and I’m not there? Will she get bullied? And what about when she grows up? She won’t get married and I won’t have nieces and nephews or cousins for my kids! And then what about when you and dad die? Where will Luci live?!”
All coming at one time from the mind of a 10-year old, being asked to wrestle with feelings that I can’t even always manage as an adult. This is what I mean when I say it is different. Khloe grieves and worries. She feels sad at what she has to accommodate for because that’s the way our life is. She feels jealous of the time we spend with Luci and when we treat them differently due to their developmental differences. I mean, I’m spending all this time writing a blog centered around one of my children and not the other.
This is our reality and we need to understand it, support both our children, and continue learning and moving forward. Although Khloe sometimes struggles with being a sibling of a child with a disability, these two also love each other very much. They are there for each other, have fun together, help each other, and love to cuddle together.
This journey has also helped Khloe grow into the amazing person that she is. She is empathetic; she understands that people are fighting unique battles that we can’t always see. She is an advocate; she has stood up for her sister and she has stood up for many other kids in a variety of situations. She is kind, caring, helpful, and has an awesome sense of humor. She makes me proud every day. And like much else in our life, it is a balance of acknowledging the tough feelings while also acknowledging the gifts each of our girls bring to our lives.
I decided to write about distance learning while having a child with a disability since I don’t think enough people are talking about school right now. Oh wait, the MN Governor is speaking THIS week about what should be happening in the fall and there are people from all walks of life anxiously awaiting his decision while vehemently discussing what they think should be happening? I guess I hadn’t noticed but I’ll add to the discussion anyway.
When I think about this fall, my palms immediately start to sweat and I feel thankful that I don’t need to make the decision about what we do. Honestly, all options sound terrible as both a parent and an employee.
It doesn’t help that every time I turn on the news, I hear new information about COVID. One day I watched a group of pediatricians say that they were all comfortable sending their kids back to school, and then a few days later another group of doctors were saying we should think carefully about sending students back to school if we can’t slow down the virus. One day I read that students don’t spread the virus and the next day I read that older students spread the virus similar to adults. What I have learned is that this virus is complex and depending on which frame of reference you are using to make decisions, your perspective can change.
So back to the fall. When I think of getting the virus (I’ve known people who have had it and it is worse than the flu) I hesitate at being back in a building. When I think of medically vulnerable adults like my mom and staff that I work with, I hesitate at being back in a building. When I think of trying to enforce mask wearing with young students while trying to keep them socially distant, I hesitate at being back in a building. And then I flashback to distance learning.
I am not exaggerating when I say that Luci got into something every single day while I was trying to work. She covered herself in make-up multiple times- once with bronzer, foundation & green eye liner that made her look like an Oompa Loompa. She’s taken every hair piece and jewelry out of everywhere in the house, unintentionally breaking some of it and leaving the rest in a Hansel-Gretal-style trail behind her.
She painted her own nails and managed to get more red nail polish on her white rug than on her nails. She’s found many new ways to secretly play with water, including squirting a squirt gun all throughout the house. She overflowed the bath to a point of leaking through our light in the kitchen. Multiple times, she has taken cleaning products and used them on every surface that they shouldn’t be used on, while proudly telling me she’s helping me.
She’s given herself a haircut (twice) and the dog a haircut (once). She’s put lotion all over the dog, as well as all over her own hair and body. She’s masking-taped her entire body (twice) and given herself “tattoos” with markers.
Then there were the moments when we actually tried to learn. Given Luci’s needs, there are a handful of things she can do independently but most of her new learning needs to be supported. Her scorecards consisted of classroom activities, special education activities, speech activities, specialist activities, occupational therapist activities….you can see where I’m going with this. Distance learning for everyone, including students with a disability, is overwhelming. How do you maintain performance of your job at home (for those that have the privilege of being able to work from home) while simultaneously parenting and facilitating children’s learning?
So again, no option is perfect and I see from multiple perspectives the difficulties associated with any option. I’ve mentioned some of those difficulties here and I also know there are other factors to consider as well (racial inequities, joblessness, homes that may not be safe, mental health, etc). I truly appreciate all of the creative, hard working people out there planning for multiple options in the fall and doing the best they can. Since I don’t have to make these tough decisions, I have decided to take a deep breath, sit back and wait for what is to come.
Speaking only for me, as everyone is entitled to their feelings based on their frame of reference, no matter what we learn this week, I am choosing to do the best that I personally can with what comes next. I do not have control over what decisions are made and yet I can control my own attitude and my own actions. Like so many other times since March, I will shift my expectations and I will put my energy into trying to support my family, my students, my school families, my coworkers, myself, and my community as best I can. They deserve my best.
So far I have shared a lot of the love & gifts that Luci brings to our lives. Since I promised to write honest stories from a mother of a child with a disability, I will balance my writing with the myriad of feelings that can come. Years ago I did some reading around chronic sorrow that really spoke to me (links posted on Resource page).
“Chronic sorrow’ is the term used to describe the chronic hidden sorrow that parents of a child with a disability live with on a day-to-basis. Parents often do not recognize this sorrow, nor do their friends, relatives, or the professionals supporting them. Chronic sorrow does not mean that parents do not love or feel pride in their child. These feelings of love co-exist with the sorrow. Perhaps the sorrow is present because there is so much love”
Susan Ellison Busch
Susan went on to write about how this grief can materialize at any time. I think of it like waves on a lake. Sometimes the lake is completely still and calm. Other times ripples of waves wash up and then subside. And sometimes big crashing waves overtake you for a moment in time.
Once while driving in the car, our oldest daughter, Khloe, talked about growing up and having children who would be friends with Luci’s children, much like the cousins she enjoys so much. As much as I can, I don’t limit Luci’s possibilities but the reality is she will likely never have children. This was one of those crashing wave moments. I started to silently cry as I drove, because in that moment I grieved the loss of what would have been.
Reading or listening to others’ experiences helps- it allows me to know that I can love, hope and grieve all at the same time. I allow myself those moments of sorrow and then work my way out of them. Just like in the poem I shared, if you spend too much time mourning Italy, you’ll never have the time to enjoy Holland.
There are so many supports in my life that I don’t know what I would do without. I could fill pages with every kind word anyone has said or the ways in which people have helped us out. However, one defining moment of support came from someone that I cherish every day of my life.
I met Sara when I moved to Wisconsin for graduate school- to a town where I knew no one. I drove out for a day with my aunt looking at apartments and Sara and I had arranged to meet for lunch. She already lived in the town and I was looking forward to meeting someone who had some connections to the town. Over soup and salad at the Double Dip, I immediately liked her. Our friendship solidified on that day.
Fast forward many years later, and after our second special education assessment with Luci, when we realized the extent of Luci’s needs, I sent Sara a rambling email. I can’t explain it, but I just needed to share and connect with her. She called me back and left me a voicemail, which I have saved on my phone to this day. She walked such a fine line of understanding my heartbreak, while still inspiring hope. She acknowledged that our hearts were broken and that our life paths had changed. And yet, she gave us confidence, saying that we would embrace it as it came, because that is just the people that we are. She also said something that I have cherished and played back in my mind ever since. She said that she was looking at Luci’s picture and she could just feel that Luci was “going to be one of the most inspiring people. That she was going to teach us way more than we would ever teach her”. And she was right.
If you know someone on this journey- acknowledge their pain but also acknowledge all the hope that is still there for a beautiful future.
I will never forget the moment that a former co-worker, someone who loves children and was a dedicated teacher, talked to me about helping a family understand the implications of having a student with a cognitive disability. She feared that this student’s parents were set up for disappointment because they didn’t fully understand their child’s needs. She wanted to save them from future heartache, and wanted me to be very clear with them about what they could expect from their child in regards to academics and the future. I struggled with how to respond to her request, which happened 10-years ago.
Being a school psychologist, I administer IQ tests and rating scales and other standardized measures – meaning I work with students and use mathematical methods to compare how they are performing in relation to other children their same age. However, part of my training focused on how this information can be used in dangerous ways; one way being overgeneralizing results.
I think what people don’t understand (and why would they if they have not sat through the same courses that I have) is that these tools are very specific in what they measure. They are based on one day of work or one person’s rating at one moment in time. Although they are a good way to get an estimate of skills before making certain educational decisions, they are by no means an indicator of life achievement. How do you measure that anyway? Who is anyone to say what someone is or isn’t capable of?
I can understand where this teacher was coming from- from her perspective she was trying to help the family and save them from disappointment because she cares. However, from my perspective as a parent of a child with a disability, I’ve realized that I’m “not in Italy” and some things will be different for me “in Holland”- disappointment will happen. I prefer to live in the reality of what is happening in the moment and hold out hope for what the future could be.
One of the biggest mistakes I believe we make when looking at data- scores on tests, number of disciplinary reports, grades or anything else you can think of- is using that to create a life sentence for our students as opposed to looking at it as an indicator for that moment in time. The truth is, we don’t know what each individual is capable of. But if we do not believe that they are capable of greatness, then we will never expect greatness from them.
So although I believe in using data responsibly to make specific decisions, I also know that children are so much more than numbers. Measuring success or potential is like trying to measure happiness or love- it cannot be done.
Our Luci brings many gifts to our family. One is her desire to connect with others and one is the laughter that she fills our lives with.
Years ago, we met some friends at Hyland Park in Bloomington (it was called Chutes & Ladders when I was growing up). On the one hand, it is a giant park where kids can run off their energy while having a great time. On the other hand, it gives me heart palpitations every time we visit. For a parent of a child with a disability (and probably for other parents as well) it’s a giant vortex for your child to get sucked into.
The park is made of a maze of slides, ladders, bridges, tunnels and the monkey bars of death as I like to call them (if you’ve been there, you know what I mean). Needless to say, sending my brave, independent Luci into that maze has always been nerve wracking.
On one particular visit, I was tracking Luci before becoming distracted. When I went to find her again, I couldn’t see her. For any parent who has lost their child in public, you know the panic that ensued. I immediately began searching for her as each worst case scenario flashed through my mind.
It felt like 2 hours but was likely closer to 2 minutes when I found her
…sitting at a picnic table
…with another family
…smiling and casually eating their food. As I walked up, Luci called cheerfully, “Hi mom! I eating!”
I was half relieved and half mortified. Wondering if my child walked up and just started eating with this family as they sat politely wondering where this child’s neglectful parents were. However, they quickly assured me that their daughter and Luci had been playing together. Their daughter walked Luci over to introduce her to her family and asked if they could share a snack. They seemed unphased by the situation and asked if it was okay that they shared their snack.
Later Ray & I were able to laugh about it, it was just so “Luci”. She has such an open heart and loves making friends while bringing joy to others wherever she goes. On this journey, noticing strengths is important. And laugher, you must have laughter.
When we were first heading down this journey of discovering Luci’s unique needs, so many supportive people showed up for us. Even from all the responses to my first post, I am humbled by the love and support from the community we have surrounded ourselves with. ❤️
I know when other people have been going through a difficult experience that I can’t exactly relate to, I always struggle to find the right words or the best way to show support.
In more recent years, I’ve been asked to talk to parents who are just starting on this journey, I’m assuming because I can relate. I’m always happy to do so, if parents want to talk. Mostly I try to listen and normalize the many feelings that they may be having. Often, I also share a poem that was shared with me early on in our journey.
The poem came from one of my aunts and it resonated so deeply with me. It illuminates the myriad of feelings that occur when you find yourself on this path. Shock, fear, jealousy, grief, love, hope and the realization that you have been entrusted with this beautiful gift of a person. The Holland poem provides some insight into what parents of a child with a disability may be going through.
Regardless of how that support is shown, at the end of the day, I am so thankful for our community that has wrapped around us and loved us. It’s not so much about what they say as it is knowing that they care.
Many people describe a moment in time when their life changed. I don’t know that I can describe a specific moment when our lives changed. It came on more gradually, like a plot to a story. The build up of the story and the initial clues that something unexpected was going to happen. The guessing game of where this story would lead. This is how our lives changed with our daughter Luci.
I remember noticing that Luci’s motor movements seemed to stagnate after she started rolling. I kept waiting for her to crawl, and yet she didn’t. Loving, kind people told me that not all babies crawl and some go straight to walking. However, as I watched my friend’s children begin to hit specific milestones, I couldn’t help but harbor a private fear that something was wrong. Given my job as a School Psychologist, I lived in this juxtaposition between my job and my life as a mother. I constantly wondered if I was over-analyzing my own children because of the nature of my job.
I remember going to Luci’s 18-month check-up and finally putting my fears into words – should I be concerned that she wasn’t walking yet? Our doctor, who has been a savior on more than one occasion and whom I would trust to this day with my children’s lives, was very matter of fact. She pointed out that some kids are at the end of the “bell curve” (a term I know all too well in special education and is a tool used to identify how close to “average “ or “typical” children are) and that Luci would probably be walking by 20-months. She said that she could recommend a specialist now, or we could wait until 20-months to see. I waited and low and behold, our fighter was walking by 20-months.
Relief hit and stayed for some time. Then, as Luci hit 2 ½ years old, I noticed that her speech wasn’t developing at the same rate as her younger (by 3-months) cousin. Again, I lived with the agony of wondering if I was over-thinking things because of my job. Although at times and with specific people I shared little bits of my fears, I never fully opened up about the thoughts that creeped into my mind late at night. By the 3-year check-up, however, I knew that there was a concern. Luci’s doctor agreed and the months that followed were a flurry of audiology appointments, speech appointments, and special education screening followed by testing.
When concerns were initially discussed, I pointed out that the only concern we knew for a fact was with Luci’s speech. However, deep down I wondered if it were more. Being faced with such complicated fears, it was almost as if I could convince others that speech was all I was worried about, then it would be all that I would have to worry about.
I remember early childhood screening clearly. My husband accompanied our 5-year old daughter Khloe, who was full of excitement and wonder for her upcoming Kindergarten year. I went with Luci, who has always been my shadow (a fact to this day that I admit I love). She and I went in to meet with the first screener- Luci slightly timid and me babbling on about speech being a concern. However, as the screener asked her to complete simple tasks, my heart began to sink. Even with my background, I have to admit I was shocked at what Luci wasn’t doing. I brushed it off to the examiner saying that she was shy in new situations.
Over time, we visited developmental pediatricians, had genetic testing, and participated in more special education testing. Luci was eventually identified as having a global developmental delay- meaning she was behind her peers in multiple developmental skills (communication, social, adaptive, cognitive, motor). This was just a start though. Our medical journey continues.
Having worked for years before this as a school psychologist, I always thought that I was pretty good at showing empathy to families when you discussed what it was their child “wasn’t able to do at a rate similar to their peers”. However, going through this with Luci, I recall specific moments or phrases, and am saddened to think of how families must have felt. No one can prepare you for these conversations. No one can describe the fear, the sadness, the sense of loss. Over time, I’ve realized that although Luci may not always meet all milestones in the same way that other kids her age do, the way in which we discuss children with a deficit mindset is a travesty. When others do not live up to the “average” or the “norm” that society has set and expects, we view this as a problem that they need to overcome. However, maybe the problem that we need to overcome is to quit setting a standard that we believe everyone needs to meet in order to fit in and be happy. One of the greatest gifts I have been given is that every day, Luci teaches me that there is more to life than being “average”.