Every child with special needs has strengths and weaknesses. As parents, we are bombarded with evaluations that itemize our children into small brackets of development. We see on these charts exactly where they match up compared to their peers. Our therapists help us understand where they are and how far they still have to go. In the early years, I use to look at these developmental charts and hang my head in tears. I will never forget the first time I saw “Less than 1%” for my son’s expressive and receptive language. Another time I scanned a report, and I saw, “Severe oral motor deficiencies – 12 month age equivalence.” Every single aspect of his development has been analyzed, assessed and tested numerous times over the year. The very first assessment was by far the hardest one to acknowledge. It was easier for me not to see the delays, and not admit that he was behind than it was to seek help. The daunting task of helping him catch up felt incredibly overwhelming in those first years. However, I remember a friend telling me, “The assessment is only a photograph of where he is now – not who he will become.”
It was then I realized something very, very simple and something that I have carried with me on this entire journey in parenting. As a parent of a child with special needs or disabilities, you have a choice to either hate the situation you are in, or you can embrace your place in the world and fight to improve your child’s life. Your position will impact your life in every single facet, and it will shape your opinions, your outlooks and the treatments you pursue to help your child. The path of negativity, denial, and hatred of either the disability, disease or illness, will take you into dark places. I can share that in my own experience, denial and hatred lead me to self-blame, exploration of experimental treatments, and self-loathing of my position in life.
In the very early stages of the diagnosis, I blamed all of it on me and the choices I made while pregnant. I was angry at my doctors, my son’s doctors, and I wanted to sue anyone that made my child sick. There were countless nights I spent online reading about lawsuits, contacting attorney’s and exploring any way to be compensated for the emotional turmoil the diseases ravaged on our family. I blamed the drugs I was prescribed, the care I received prenatally, the advice I was given by doctors, and the choices I made in what I ate and ingested during pregnancy. When that lead me to a dead-end, I evaluated my son’s care and the hospitals, doctors, and nurses that should have seen his illness and prevented his time on life support. The fact was that I was angry, and it didn’t matter who was in my path, I wanted someone to take the fall for the fact that he had incurable diseases that will significantly impact his quality of life, reduce his life expectancy, and affect his ability to work and function as an adult. Anger became a bitter pill that I woke up to every day, and I pushed away friends, family and my marriage suffered. My interest in my employment lagged, and over time I became so utterly disenchanted with everything around me that I self-isolated and ate, slept and breathed anger every single day.
Suddenly it occurred to me that I could no longer go on being angry and wanting revenge on everything or anyone that could have caused my son’s disease. It became apparent to me that if I wanted to be a loving parent, a good friend, and a dutiful wife I had to find a way to let go of the pain and anger. I wish I could say there was a path I took to let go of it but it all happened very gradually. When we went to appointments, I started to learn about the therapeutic techniques that could help my son. At the doctor’s clinics, I asked questions and sought information on how to best treat his diseases and improve his quality of life. We added doctors to his team whose sole focus was on quality of life improvement and adaptive equipment so he could live a life of more inclusion. With every day I gained perspective, knowledge, and insight on what it meant to embrace our place in the world, and I slowly learned how to advocate for his needs, wants and future.
As time went on the fog and haze of anger had lifted from my life, and I was feeling confident about the future. Nothing had changed in his life or his development to make the change in me happen. What changed was I realized that to be the best mom for my son I had to be able to stay positive for him. My son relies solely on me to fight for his medications, his treatments, his therapy, his county services, and his quality of life. If he stands any chance of independence in life, it is on my shoulders to help him develop skills to meet that goal. I have also realized that independence for him may look different than a child that is typically developing. Instead of focusing on what will be or what could be, I focus on what I am doing every day to help him have the best possible outcome.
Parenting is exhausting work, and there are days I don’t know how I am going to keep fighting for him. However, I know that I have to keep going despite my frustration, sadness, or grief. It’s also important to remember that life is fluid and emotions will come and go as fast as each day that passes. Some days are still really hard, and there are moments when I still fall apart. The difference now is that I allow myself to feel the anger, the frustration, and sadness, but I don’t allow myself to stay stuck in those emotions. If there are a few days that I am down, I allow myself some grace and know that tomorrow is around the corner. Each day that passes is another opportunity for life to get better and for my attitude to improve. When I am having those tough days, I forgive myself for the feelings that are running through my mind. I remind myself that I despite the speed bump we have faced we can get through every obstacle. Instead of anger and grief swallowing me for months at a time, I can measure that pain in days and sometimes hours and minutes.
The best thing I have learned is that I have to be grateful for having the opportunity to parent an amazing little boy. He deserves me to be at my best, and he deserves to see a mom that is happy on the inside and the outside. I am sincere in my happiness now, and I’m not faking anything when I say that despite our hardships there is nothing in my life I would rather be doing than parenting my son.
If I can offer you any take away from this article – it is simple. The one choice you have to make is to either be negative or to be positive. It will be easier to be negative because the weight of the diagnosis can feel suffocating. However, when you choose to be positive, you are choosing hope for the future. It will enable you to be more centered and focused at appointments, managing paperwork, and implementing treatment plans at home. It will not be easy to be positive, and there will be days and sometimes week that you will be unable to see any silver linings. When you chose positivity, you will want that every day that passes is an opportunity to help your child, to love your child, and to cherish the moments you have with them. On the days it’s hard to find happiness, allow yourself grace and forgiveness and give yourself the time to be sad, angry or frustrated. However, do not stay stuck in that anger, bitterness or sadness. When you can pick yourself up and dust yourself off, you will realize that it was just a blip on the map as you travel on this journey in parenting a child with special needs. Positivity will give you the strength you didn’t know was possible, hope you never thought imaginable, and an inner peace that is invaluable. What choice will you make today?