7 Things the Doctor Didn't Tell Me When Delivering My Child's Autism Diagnosis


You might see red flags in your child’s development, apprehensively look all over the internet hoping to read, “it’s nothing to worry about,” however, your next visit to the pediatrician aggravates your concern as you check-off a list of milestones missed and you finally find yourself staring at a sheet that screams “autism” back at you. Some parents may feel a sense of relief, and some may feel shattered by the news. Many parents go through a grieving period before they settle in with the new order. Many gear up instantly to fight for the long haul and some take a while to process the diagnosis. Everyone reacts to this news differently, but one thing we might all know is that we now have a new way of life and we are in it for the long haul.

As the doctor warmly smiles at you and talks to you in detail about the diagnosis, gives you a bunch of websites to visit, a list of resources to use and names a few support groups to reach out to, what you might actually carry out of that appointment is a sense of panic. You might feel overwhelmed. You might not know where to start and who to go to. You might still have a lot of question you need answers to. The “whys” and “hows” and “now what” and all the self-doubt question may start floating in your mind.

While I still continue to search for answers to these questions,  there are a few things I’ve learned along the way that my doctor did not tell me:

1. My child is still the same.

Though it might seem like the diagnosis changes your child, it does not. My child is still the same adorable, smart and unique kid he was before the diagnosis. Nothing in him changed between when we entered the doctor’s office and when we left it. I will still love him the way I did before the diagnosis. He will still be my most favorite person in the whole world and I will still be by his side whenever he needs me. If anything, this diagnosis has only made me a better mom because I’m now aware of his challenges and his strengths more than ever.

2. I’ll live through this.

When my son was diagnosed, it felt like my whole world came crashing right in front of my eyes. Only, it did not. All I needed to do was readjust my perspective. Not only did my family came out of the self-imposed misery, it came out stronger and better. We celebrate small victories in big ways and appreciate the little things in life even more. We seem to be living through this pretty well, and in fact, learning new things every step of the way. There are some days that are more challenging than others, but who doesn’t have those days?

3. It’s not about me.

For quite some time I felt like I was wronged and I did not deserve this. It was all about me, my dreams, my life that was now changed forever until finally the fog lifted and I could see clearly. It was never about me. It was about my son. He was the one diagnosed with autism. He will have learn how to cope with his challenges every day. He will be the one dealing with sensory overload. He will be the one who might have a hard time expressing himself and communicating. It is, and always will be, about him.

 

4. It’s not a gloomy road ahead.

I’ll be lying if I said I don’t worry about the future. I do. It sometimes makes me sick to my stomach thinking about what the future holds. It also makes me hopeful. However, it does not take away from the fact that my son is my joy. He gives me hope and is the reason I stand up every day to try harder. His autism does not come in the way of us having a good time. Our everyday might be different from most, but it’s still what brings smiles on our faces. We go on vacations, have parties, play in parks, shop, eat, celebrate and do almost everything other families do. Our days might be sprinkled with a few therapies, meltdowns and limitations, but I feel we also get to see more “miracles” than most. It’s never a dull day. Exhausting…maybe. Gloomy…nope.

5. I’m not alone.

There have been days when I’ve felt like I’m the only one in this situation. My challenges seem towering and I feel overwhelmed. And then I find someone facing something similar or even more challenging. It’s humbling when that happens. I now know that although it might appear as if I’m alone in this journey, I’m not. I just have to reach out to find so many others who share their stories and experiences that I can learn from. Some are inspiration and some give us hope. You don’t have to be alone. There is a whole community of people out there who provide emotional, physical , financial and professional support and stand for and with each other. There is always someone out there who has walked the path or is in your shoes. Someone who knows. Someone who understands and someone who will be willing to be there by your side.

6. It’s nothing to be ashamed of.

It took me some time to talk about my son’s autism in public, or with anyone for that matter. But when I did, it was like a heavy weight off of my chest. It was such a relief. It then dawned on me this was all my making. For some skewed reason it felt it was our “fault” our son has autism. It’s not. It’s a medical condition that we don’t have control over. I’m not ashamed of him; I’m actually proud of him for all he achieves. Then why hide? Autism is a major part of who my son is, of who he will be. I cannot hide that. I wish I knew this early on.

7. I’m stronger than I thought. 

I didn’t know I could fight like I did: at school, doctor’s offices, malls, parks and anywhere my son needs me to stand up for him. At the time of his diagnosis, I felt weak in my knees. But I watched other parents on this journey who were smiling and gearing up for yet another day and it made me want to keep trying. I see my son get up every day, excited about what lies ahead. How can I fail him? I see him look up to me when he is unsure or alone. On days when I feel low, I still look forward to the next day with a promise of something better. My son’s autism made me stronger and I did not know that going in.

This is not an easy journey; it’s extraordinary. It requires patience, perseverance and a lot of positivity. It makes us believe in our child because a lot of people out there will not. It might take a lot from us — our passion, our strength and our commitment. I did not know all this going in.

What I got from the doctor’s office was extremely helpful, but what I learned from life about autism is more profound.

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