Maybe for a while you knew something was just a little bit “off,” but you weren’t sure exactly what that was. Parenting children with special needs can be a long, hard road and at the start it seems like you are fighting with everything you have just to figure out what is going on. Why can’t anybody give you any answers? But eventually they come. And once you finally receive a diagnosis for your child, then what?
Some parents are still taken completely by surprise. Maybe you didn’t see it coming. Or maybe you thought it was something else. Maybe you had prepared yourself to hear ADHD, but a doctor actually said Autism. Maybe you thought you were ready to hear it, but you weren’t. Now what?
Then keep a few things in mind.
You were given an answer, not a sentencing.
It can be very easy to let your mind drift to the worst of the what ifs. Does this mean that your child will never be invited to birthday parties or play dates ever again or that she will never get married or hold a job? Is he one of “those” kids now? Stop. Slow down. It doesn’t necessarily mean anything. No conclusions can be drawn from it. It simply puts a name and a reason behind the things you have been observing all along.
Your child is still the same child.
He is the same kid today that he was yesterday, and he will still be the same kid tomorrow. The label they give him can change a hundred times. Some of those labels might even sound scary. Words can be scary. Children are not. He is not. Look at him over there, smiling and playing with Legos. There is still a wilted dandelion in your coat pocket. He picked it for you while you were at the park last week.
In time you will accept it.
Right now it feels hard. It is hard. You are grieving for a life you had imagined. Possibilities that could have been. You are allowed to feel that, and you will move past it. I promise. New possibilities will open themselves up to you. She is not her diagnosis. It is simply a part of her, something she has. Like freckles. It’s not going away and you can’t change it, but you will learn to accept the way things are rather than the way they could have been, and you will be a better parent for it.
It won’t change him, it will change you.
He has not become one of “those” kids. He was always one of those kids. Certain behaviors or medical issues have only been given a name. But now, with that name, you have a world of help and resources at your fingertips. Reach out and use them. Become an advocate. Join support groups. Research. Read. But do not do all of that at once. Advocacy burnout is real.
In time you will expand your social circle and you will find more empathy and compassion as your heart stretches to accommodate greater understanding. You will take up causes and fight for social change. You will use your voice and your platform to serve not only your child, but others like her. And when you feel yourself growing weary, you will learn to pull back and focus on yourself more, because through teaching that child of yours about self-advocacy, you will also learn to apply those lessons in self-care.
You are not alone.
At first you might have doubts. You might get angry and loud, but eventually this journey will increase your faith in God and in humanity as you learn that whoever said “God doesn’t give us more than we can handle” was so, so unbelievably wrong. Yes, you have been given more than you can handle. We all have. You will learn to rely on others, to reach out for help, and to share vulnerabilities as you finally figure out that you simply cannot do it all in your own strength. We are woven together in this tapestry of life. Just like my friend Harmony says, your child was chosen for you, and you were chosen for him, and the people around you who will reach out in love and with support were chosen for you both. You will all fail and fall short on your own. Then you will band together and lift each other up. Your story, with all its tragic flaws, might just be the story that touches so many other lives. This was not an accident, it was by design.
There will be hard days. But I hope you know that even on those days you are always welcome here.
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