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?
Breathe.
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.
Have you read the book Disconnected Kids? It is absolutely amazing and opened my eyes wide to the world of SPD. ?
Hi Stephanie,
I just happened to read your blog by accident. I was shocked to see how similar your story is to mine; my son’s name is also named Nicolas, and he was also diagnosed with sensory disorder. I am also a teacher, and I have a Masters degree in education and second language acquisition. I teach Spanish. I almost cried when I read your blog because I can so badly relate to what you have gone through. My four year old doesn’t eat solid and still eats baby food and ensure milk to sort of help him get the nutrition he needs. He screams when his hands get dirty, did not learn to use the toilet till recently. He is sort of social, but not. I don’t take him to many public places because people are quick to judge the way he behaves. We just got him diagnosed with autism, but he is also sort o social but not una good way. I cried all the time because I feel helpless. He just got his diagnosis. Tell me it gets better? Your son is seven now. How is his diet? How do I get help for him? He is doing a pre K program with the state four times a week. He seats on a special bouncing ball for chicle time too. He gets pulled out of his class to work with his special needs teacher, yet things are still a struggled for me. I love my Nicolas and I want to do what is best for him. Your advice would be highly appreciated.
Hello Yasiris,
I’m so sorry you are struggling and that I am just now seeing this comment. I can say that as our son has gotten older things have gotten much easier because he is able to communicate more and he has learned coping techniques that he can use himself to calm down before things escalate. I hope it will be the same for you. Talk to your pediatrician or your special education teachers. You may qualify for services like a behavior therapist. And definitely don’t be afraid to talk to someone yourself. If you don’t have health insurance or can’t afford counseling, many churches offering pastoral counseling and many times they do not charge for it. Make sure that you are doing things to take care of yourself so that you can take care of him. I wish you both the best!
Love, Stephanie (posting from my husband Eddie’s account)
I can relate…my son was diagnosed with autism at 3 and I went through many of these emotions. Parents of special needs kids need reassurance. Thanks for putting it out there!
Hi Stephanie…do you have a Facebook page? Would love to follow you on Facebook…
Hi Dana,
Yes, I sure do. The Binkies and Briefcases Facebook page can be found at https://www.facebook.com/BinkiesandBriefcases/. Thank you so much!