To the parents of the child just diagnosed:
Hi, I am Lorraine. These days I am a writer, blogger, and die-hard Astro’s fan. Over the years I have perfected my chili recipe and I like to make cinnamon glazed almonds at Christmas. My friends are scattered all over the country, I have sung solos at numerous weddings, and the launch of my first book is only a few months away. I am grateful for more things than I can count, but especially my disability.
Welcome to my world.
It is totally understandable that you are grieving right now. The change in your family dynamic. The lost expectations. The life you knew that was so comfortable and familiar. The range of emotion you are experiencing at the moment might be all over the map. Anger. Fear. Sadness. Confusion. Overwhelm. Take all the time you need to feel every bit of it. Doubts and questions will come in waves. And the unknown can feel completely encompassing.
As an adult who is living with a disability, I can tell you that your journey will be different than most. But different is not good or bad. It is simply different. There will be ups and downs. Joys and sorrows. Agony and amazement. And each journey, whether it includes disability or not, is unique. You will learn incredible lessons.
My disability has taught me to slow down. To notice the little things that sometimes get overlooked. To celebrate small accomplishments. To realize that it is a big deal if I do something successfully that I could not do yesterday.
My disability has helped me to be more tolerant than I think I would have been without it. Since I don’t like other people to judge or make assumptions about me, I put effort into not doing the same with others. It is important to me to accept everyone around me just as they are.
My disability has made me intolerant of injustice. I will cry “foul” with most people who treat me “less than” and I won’t sit still when I or the people around me are being treated like they don’t matter.
My disability has helped me to use my voice. I have been known to advocate for what I need or the needs of others like me. Sometimes loudly. Always passionately. And I won’t give up until there is a resolution to an issue I am facing. People have told me more than once that the most frustrating thing about me is that I won’t go away. To me, that is the ultimate compliment. 🙂
My disability has made me unafraid of the medical community. I will listen to what my doctors have to say and I will ask questions. Then I will say what I think. Since I am the one living with my disability, I am the one who knows what is in my best interest and what works for me. The medical professionals that I respect and go back to are the ones who understand that I know myself well and it makes sense for us to work together.
My disability has enabled me to experience things and to meet people that would have never been part of my life otherwise. Some of my biggest mentors were other people with disabilities. Not knowing them or having them share their wisdom would be a big loss for me.
My disability has taught me that I am a survivor. The road has not always been easy and I have faced some challenges that I thought were too intense. Coming out on the other side has required me to look outside the box, to look for creative and unconventional solutions. On most days, my biggest motivation is my inner “I can do it!”
One suggestion would be to love your child ferociously. Help them to feel it and know it at the core of their being. Even so, tell them several times a day. There will be those around you who will never understand, and out of their ignorance, they may treat you or your child badly. From the person who totally ignores your child and pretends he or she is not in the room to the person on the other end of the spectrum who magnifies your child’s medical flaws and makes them feel like a freak show at a carnival. People who don’t get it can also live anywhere in between. There are times when the only antidote for people who are clueless is a really good self-esteem. And a sense of belonging.
As soon as you can, include your child in the goals and plans for the future. What does he or she want to physically be able to do? What does he or she not mind having help with? Is he or she okay with not doing everything that he or she is physically capable of? Please include your child in that decision-making process. Ultimately the outcome will affect their life individually.
My other suggestion is to make sure your child’s life is about more than disability. Allow them to laugh and play and take a day off from therapy once in a while if they can. Enable them to pursue hobbies that bring joy to their soul.
There are times when my disability can get in my way. But most of the time I am grateful for it. I wouldn’t trade my circumstances. I love the life I live, frustrations and all.
Welcome to my world. It’s a pretty wonderful place to be.
You can do this. I believe in you!