The Day I Found Out My Child is Disabled
By the time my son Max was two years old, he had spent more than six months of his life in hospital rooms, roughly 400 hours in different forms of early intervention therapies, and close to 100 hours in specialty appointments. Finding out my child had a disability didn’t happen in any of these appointments or evaluations. This...this is the story of how I learned that my son Max has a disability.
In May 2017, I gave birth to triplets Maggie, Max, and Miller at 24 weeks and 1 day. All three babies began the fight of their lives as they were rolled down to the NICU. This isn’t a story about our NICU stay, but please know that our babies had less than a 20% chance of survival. Those 22 and a half weeks we spent at the NICU were dark, scary, and also filled with heaping amounts of hope. We are part of the few who got to bring all three of our babies home with us; Maggie day 142, and Max and Miller day 158.
At forty-eight hours of life, Max suffered a pneumothorax (a collapsed lung) and had three chest tubes inserted. It was too much trauma for his 1 lb 9 oz body to handle and it caused pressure on his brain. The doctors were able to get him “critically” stabilized and completed an ultrasound of his brain to find that the pressure had caused a grade III bilateral brain bleed. We were told this news at two in the morning in a dark room with a medical team around us. We were delivered the harsh statistics of what this could mean for Max and what his life would look like if he did indeed actually get to come home with us. We were told that a grade III brain bleed meant he would be disabled. My husband and I sat awkwardly around a conference room table as we cried with complete strangers who would later become like family. They became a safe place to show our battle scars without explanation. After we gathered ourselves, I was wheeled into Max’s room where he laid in a dark, warm isolette. We couldn’t hold him or touch him. We just sat silently and prayed. But, as we sat there and let the reality of the news sink in; it wasn’t in that moment that I saw Max as disabled, I saw Max as my brave boy.
Our developmental clinic allows the child to diagnose themselves (unless it’s genetic), which I appreciate. This process does take more time, but proves to lead to less false diagnoses. We went through the first two years of life without a diagnosis. Just working through evaluation after evaluation to gather enough information to make an informed decision. I knew at this point this wasn’t just a delay, meaning something he would “grow out of.” We were looking at a lifetime of working for Max to have the best quality of life possible. The clinic finally felt like they had enough data points and in May 2019 we made the hour drive to Atlanta to wait and hear the results of his diagnosis. The doctor asked me a lot of questions about Max and what I thought his strengths and weaknesses were. I told her how far Max had come in his two short years of life. He gained head control at 9 months, started interacting with others when he got his glasses around 10 months, at 17 months he began to scoot across the floor on his belly, and around 22 months he was working on sitting with the use of his hands. I also told her how Max loves to say “no” while he shakes his head simultaneously, or how he can’t sleep without his lovie, or how he eats more greek yogurt than any person I have ever met or the fact that his favorite activity is playing with Maggie and Miller and pushing cars along the floor.
I remember her smiling and saying, “Wow, sounds like a fantastic kid. You are so lucky.” The doctor delivered the news in a confident and compassionate manner. “Max has Cerebral Palsy. CP has four different forms and affects each patient differently. Only more time will tell how his CP will affect his life long-term and what form he has. But, what we do know is CP affects a person’s ability to move and maintain balance and posture. What I can also see today is that Max is loved and you are providing the best care.”
I left that appointment feeling completely heard, seen, and relieved. She had seen Max as the amazing little boy that he is. Can I be honest with you? Receiving the diagnosis that day only changed one thing for our family, we were now able to receive the secondary insurance that is needed to adequately care for Max. I am also around enough mamas wading through the medical world with their kids to understand that this appointment tends to crush parents. It sends a tidal wave over them and plunges them into depths that are unknown and scary. I think for me, that I had already had the hard “look inside myself” moment that is...I will love my child even if_______.
So then when? When did it hit me as a parent that Max has a disability? That I was a parent about to spend my mothering journey advocating for my child in this world and advocating that Maggie, Max, and Miller belonged together.
The day I found out my child has a disability happened touring preschools. It might be at this point where you are thinking, “Lady, you have been in denial the past two years or aren’t willing to accept the cold hard facts,” but in reality it hit me in a preschool hallway lined with other typically/normally developing kids, when it became clear that others saw Max as disabled. And it was in that moment that others made me feel like Max was other. Then it hit me. I have only seen Max through my eyes and this is the only way I know Max, but for others they first see that he is different. This...this is how they know Max. They see Max with a disability. I began to cry and then cried some more. It was in a series of preschool tours that I kept getting the feeling over and over again that Maggie and Miller were welcome, but it was different for Max. No one ever said he wasn’t welcome. It came in all different forms. Like the questions;
“Do you think Max would be safe here?
How will he participate in school activities? or
Do you think as a parent you are comfortable with the care he would get here?”
It was in this series of touring different and well respected preschools that I found out my child has a disability...not from the hundreds of hours of therapies, elevations, hard conversations with doctors, but through the eyes of others.
I also found that the typical first response after I told them that Max has Cerebral Palsy was, “I'm sorry.” Why was that their first response? And why would they feel sorry? This type of response is given when you see someone as other, inadequate, or not belonging. Max is not other, he is more than adequate, and he does belong. It was in those weeks to months that followed touring schools that it became even clearer to me, parents with children who have disabilities are bombarded with “everyone else” seeing their child as an obstacle or causing more work or needing to belong in a different space. Let me be clear, a child is not an obstacle, but a chance to learn from someone who is different than you. It makes me sad, actually angry that others first see the disability before they see the child’s strengths. Initially, not one of those preschools asked me or said, “Wow what an amazing kid or We can’t wait to meet him, Or we would be honored for your child to belong to this school?, Or we believe in every kid belonging.” These types of responses would have been turning the table, rewriting the script. We need more people who see as “we” or “us” not “them” or “other.” We need to be people who believe inclusion is not the final step, but belonging is. We need to be people who are quick to pull up an additional seat at the table so that all have a place to belong.
I look back on my journey in learning that I have a child with a disability and can not believe it didn’t happen in a waiting room, doctor’s office, or an evaluation. But in those rooms, in those circles we all marveled over how far Max has come, not how far he has to go. We must do better. I must do better. Together we have the opportunity to pull up a seat first, be the school that welcomes instead of hesitates, be the friend that ask questions instead of avoids, and create a world were ALL children are seen for what they have to offer versus what they are lacking.
To my brave Max, You are seen. You are loved. You belong. You are not other.