The Invisible Disability

A letter from a mother of a child with Tourette Syndrome,

As a parent of a child with an invisible disability, we start our parental journey just like you. Our pregnancy and delivery are normal. Our kids are born in good health and weight. We dress them and bring them home with pure joy and excitement for the future. Our kids look just like yours…our kids are seemingly the same.

Around age 2, this perfectly healthy child, who looks completely regular like your own, starts exhibiting different behaviors. The page they draw has to be perfect or they tear it up, they make a verbal noise repetitively throughout the day; or in our case, there’s a nervous tic that causes your child to rub their hand down their face from forehead to nose so frequently that their face looks like someone dragged them across a carpet. They begin to seem anxious. You take them to their doctor because you are a new parent and you want to be sure your kid is ok. The doctor signs his seal of approval and tells you not to worry your kid will grow out of it.

You sit silently existing as a parent, becoming immune to your child’s obsessive traits, motor tics, and anxiety and you tell yourself the doctor knows best. They will grow out of it. When you’re seemingly “normal to the human eye” child acts a bit off in social circles, you already begin to find yourself defending the behaviors to other parents and explaining them. It’s as if you’re reasoning with a judgmental parent and hoping for acceptance.

The years pass on and next thing you know your child is 5 years old. Unlike the doctor’s predictions, the child has not grown out of any of it. As a family, you learn to accept that this is just who the child is and you treat the child as if they are no different. A new milestone approaches, and you are walking your baby into kindergarten. Any parent understands this huge milestone. You are filled with wonder and hope. This day starts your child’s journey of education and growing up. You cannot even fathom to think that in 13 years it will be over, and they will be graduating. It’s an incredible feeling. But then two months into the start of the school year, you get a call from their teacher. They are worried about your child. Your child seems anxious and depressed. You as a parent think…depressed at age 5? How can this be? We have dinner every night as a family, we go on fun outings and adventures. My kid has so many toys and love in the house. How can this be possible? However, despite what I know, this is a professional who works with children everyday so I must listen.

For the parent with the child with the invisible disability, this is where the journey begins. At times, I like to say that this is when “the battle” begins. It’s the moment in your life that you shift from I am a parent to a soldier. The ladder is placed in front of you and you have to climb thousands of steps, sometimes in my case completely alone. You attend “the meeting” with the teacher and school professionals to discuss the “different and concerning” behaviors your child is showing. In that room the teacher confesses that your child vocally speaks that something is wrong with their brain and they just want to jump in front of a moving car. Your 5-year-old has said this to their teacher. In that room that day surrounded by staff you go through almost a box of tissues in tears. Your parental instinct since the child was 2 has told you something feels different but being turned away by doctors you accepted it was your child’s normal, but yet here you are being told what you saw in the years past were in fact real. This was reality. With the help of school, your child goes on homebound instruction, and it becomes a year of evaluations, doctors, and diagnosis. This is the first of many dark tunnels.

You see the light at the end of this first tunnel and at the end is a stack of paperwork and diagnosis. Your child is classified within the education system. Your child’s mind is sick but no one can see it. The process begins, your child is placed out of district to a “special school” which when another parent asks you are almost too embarrassed to say so you respond, “oh we have them in private school.” For years the doctors change, the medication changes, you almost feel at times your child is simply a lab rat because truth is working with someone’s brain and mental wellbeing is invisible, they can’t see it. Professionals try their best with the tools they are given and the symptoms they see but at times it is wrong, and the medication causes your child’s symptoms to get worse. They act out, they are aggressive, or they are a zombie. Eventually it evens out. Your child is seeing a great doctor, has wonderful support from the education system and it feels like this is going to be ok.

Before you know it, the years have passed, and your child is growing up. They enter their teenage years and their desire to be “normal.” Instinctively just like any other teenager your child wants the same opportunities and experiences as other kids their age. You as a parent go back and forth on the notion because you know inside yourself how cruel the outside world can be. For so long you have constructed a protective bubble around your child protecting them and their challenges from the cruel world but your child expresses how much it means to them to walk the halls of a regular high school and just be normal like everyone else. So, you finally oblige to their wishes because in the end your child deserves the same opportunities and experiences as everyone else despite their silent disabilities.

As you drop them off on their first day entering mainstream high school, a tear rolls down your cheek. You remember the first letter your child ever hand wrote to Santa. Dear Santa, all that I want this year is a new brain so that I can be normal like everyone else. You think about all the years and the struggles, and despite them all you are both here standing out front of a mainstream high school. You are scared but you are hopeful, and you let go and send them on their way. You are struck by their will and strength to try despite the obstacles. You almost think to yourself could I in fact take this walk into this unknown with challenges such as they have? At that moment you almost look up to your child, and in that moment, you are led to believe that if you believe enough in yourself you can take any walk no matter how scary that walk might be.

We are now looking at the last 4 months of our high school career. We have almost made it. But it is within the pages of the last 4 months that I as a parent found myself needing to write an open letter about the experiences because out of all of it, every trial and tribulation, high school has been hands down the hardest experience. It has deeply affected not just my child, but me as a parent. My child since birth has looked exactly like your child, and because of this you expected my child to act just the same as your own. When your child noticed that my child who looks completely the same is just not like them, they decided to tease and bully. They decided to call my child bad names, throw things at my child. Your child chose to get my child upset, record them on their cell and laugh with others on social media about my child. Because your child who looks just like mine turned their back and made my child the end of their joke, my child ate his lunch alone in a restroom stall day in and day out. My child was forced to change out of his gym clothes in a private bathroom verse the locker room. My child was even forced to have an entire year of school at home with a teacher because the teasing was too much for one person to take and since he suffered from an invisible disability his emotions could not handle the ridicule.

I am not saying the parent of a regular child is a bad parent. We are all in this together, a team. You, just like me, have done the best you can with the cards that you were dealt in your lives. I commend you for that. I am so proud of that parent whose child is the leader on a high school sports team. To the parent who got to see their beautiful child wear a crown at a dance. To the parent who has worked hard enough that their child can pull up in a brand-new car. To the parent whose student has pulled in perfect grades all four years and is being inducted into honor society. I am proud of each and every person I share a role as parent with. This is not an easy job. No matter the journey we are all a success story when it comes to our kids. But just as wonderful as your child may be because of all the wonderful things they have accomplished so is mine. While they look the same, but are different, while they may not be the most attractive, while we may seem a bit quirky I can assure you that these kids are just as amazing as your own.

The purpose of this letter in regards to the invisible disability is simply awareness and the human ability to teach kindness. We watch videos on social media about peers being kind to kids with visible disabilities and it is so heartwarming. Many will say that’s incredible parenting to raise a child so kind, and it truly is. However parenting begins with all of us. Parenting is not telling your child to be kind to others who visibly seem different to us. Parenting should be, “be kind to everyone because you never know what someone is battling.” Mental health is a stigma which in the last 18 years I have personally had to navigate with my own child and in the years it has evolved. I went from being a parent trying to hide or explain my child’s behaviors simply to be accepted by other parents, to now it is OK to talk about what is wrong and advocating for it. But along with being able to talk about the issues it is important to face a huge issue that I personally saw with my son’s experience in high school, the lack of kindness from others. It is so important as a parents, teachers, guardians, advocates, celebrities to teach our children not just to be nice to the person that looks completely different and disabled but to be kind to all. There are invisible disabilities out there that you cannot see, hidden battles that you will not know, but they are very real and every human being is important.

I am not asking for a viral video of your child being kind to mine because of their disability. I am just asking that you instill from the start the act of kindness. By instilling these values early on it will lead to better experiences in life for not just your child but to the children who are facing challenges one would never understand. It will create children being kind to children, and later become adults being kind to adults. There is no name to this letter, this letter is written by a shadow of one person on behalf of I am certain hundreds of thousands of people. Whether school age or adult. Though at times you may feel it… you are not alone. I am a kind person, wanting to do kind things for others, in hopes that anyone who reads this will feel the same and vow to teach your child just the same. It is this spark that is going to light a fire, and it is within that fire it is going to change the path for so many in such a positive way today and always.

Teach kindness…. it can change everything for everyone!

– Tiffany Kurtz

invisible disability