This one is difficult. I’ve only been doing this for one year and am still learning a lot. I’m not sure what I would say or ask for because I don’t know what we need. I am going to change this to “A Letter”.
Before I had a special needs child, i had no clue this world existed, which I am sure that you and 95% of others feel the same. The world of genes and neurodevelopment and doctors and therapy… I assumed doctors could fix almost anything. They knew the issues.
I also attributed intellect and disability to something the parents did wrong.
I was so wrong. Now that I have my son, my little puzzle, I realize the stress and hardship these families go through. I am terrified that he will be judged or treated like some type of object and not a human being with feelings and emotions.
I ask that you, the world, be more kind. Think before you speak. Treat others how you want to be treated. You have no idea what someone else is going through in their life.
Carter may not respond like a typical baby, but he loves to laugh. He just wants happiness, like everyone else. Don’t treat him like he can’t see or hear you. Touch him, hold him. You won’t catch his delay. He isn’t sick or stupid. Maybe you aren’t funny? Maybe that’s why he doesn’t laugh at you…
I want inclusion. I want him to be able to have a happy, productive life and experience what every child can experience. I want him to exceed goals and be proud of himself. I want him to know he is so loved. By so many people.
I want you, the world, to be more accepting of those with disabilities. We are better than we were years ago and we can only move forward.
And you people who produce special needs equipment. I get supply and demand, but we are already paying a shitload of money we don’t have to assist our children in living. Doubling the price of a car seat because it swivels and labeling it special needs is not ok.
You government and insurance company people. I don’t know quite enough about your jobs to tell you how to do it, but I know a little. I know that my husband and I are doing every single thing we can support our child. We make next to nothing but our income exceeds support? Or you won’t cover basic supplies my child needs to survive? It’s ridiculous. Begging you to cover the only formula my son can consume because he is failure to thrive is laughable. He can’t live without it. That means nothing to you? A little babies life? Something needs to change.
All in all, I want Carter to be accepted and I want to be able to provide for him. Both of which I’m unsure of. And it’s scary.
Thanks for listening.