I never felt very brave in my life until my son’s diagnosis of autism three years ago.
Now, I pride myself on my bravery, honesty, and outspoken desire to give him the world. Since this life can be confusing and lonely at times, I wanted to share my experience with others in similar positions. My hope is that reading about my journey may help others in the midst of, or beginning, their own.
One in 59 children will be diagnosed with autism, and we have an amazing opportunity to help promote awareness, to reach moms that are drowning in their anxiety over the diagnosis, and to explain the process by which to get a diagnosis.
I know so many moms who are trying to hold themselves together — no matter what the special need their child has — and when we compare ourselves to an unattainable goal of perfection that moms with neurotypical children are sharing on social media, it can be soul-crushing.
If you’re navigating the space after receiving a special needs diagnosis for your child, you are not alone. We, the women who have come before you, are here to lift you up. Here is how I walked through the process of moving forward after my son’s autism diagnosis.
Breathe in and out
There is a line from a movie that I love where the main character is describing the process of moving through grief. He remarks that, in the morning, he will get out of bed and breathe in and out, and he will do that every day until he no longer has to remind himself to get out of bed and breathe in and out.
No one really talks about the grief you feel when you receive a special needs diagnosis. It’s hard to understand exactly what you are grieving because you haven’t truly lost anything. But, in your mind, you have — you’ve lost your picture-perfect expectations and the idea of what being a parent looked like in your dreams. You’ve lost your star athlete or sweet ballerina, the “soccer mom” or “dance mom” lifestyle you were so looking forward to.
While those things aren’t necessarily gone, life is going to be different and you don’t know what it’ll look like yet — and that’s OK. That’s the beauty of this journey — the unexpected, happy surprises; the special little victories no one but you will understand, the spontaneous dance parties that will take place for milestones you never would have batted an eyelash at before. Now your world is totally turned upside down from what you thought it would be, and I’m telling you, it’s going to be great!
I’m a big TV junkie and The West Wing is an all-time favorite of mine. This phrase is used in almost every episode, and for good reason. It implies that all the pertinent information needed to move forward has been presented and it’s time to move forward with purpose.
“What’s next?” is the constant mantra that goes through my head every day since the diagnosis. It reminds me of what is most important about this journey: forward movement. Progress will become the word you desire to hear the most. You will talk with many doctors, nurses, therapists, and case managers, and the word progress will be ever-present in these conversations. Progress will become your whole world. Embrace this word, live this phrase, and chase down new dreams.
Find Your Tribe
Since I have a family member with a similar diagnosis as my son, I was familiar with its ups and downs, but only from the perspective of an aunt. When it’s your own child, it’s a whole different experience. You might have thought you understood or could relate to the challenges of others, but you don’t and you can’t.
When I became a special needs parent, it took me about six months or so to catch my breath and digest what the doctor had just told me. When I finally picked my head up to start looking for my tribe, I didn’t know where to look. I took the first step of attending a monthly meeting that my school district hosts for parents with special needs children who receive services at school. I cried my eyes out that entire first meeting — like, ugly cried! Thankfully everyone in the room totally understood what I was feeling, why I was crying, brought me tissues, and gave me those knowing hugs I had needed since diagnosis day.
Outside of this group, it was hard finding others who were open to sharing. Part of being a special needs parent is admitting to yourself that that title applies to you.
Part of being a special needs parent is admitting to yourself that that title applies to you.
Once you’ve done that, you can start looking. Check out Facebook, research local support groups, and most importantly, start talking about your challenges to everyone. Just being open to sharing my story with others has lead other moms who are just starting their journey to seek me out for advice.
Before you know it, your tribe starts looking for you. Your new neighbor tells you all about their friend from their old neighborhood that has a child with special needs that she wants you to meet, a parent from your kid’s school tells you about her sister who doesn’t know how to get her child an IEP, and then one day you strike up a conversation with the woman exercising next to you and realize you’re both in the same boat and end up crying together right there in the gym.
Put these people’s numbers in your phone. These are your people.
Chances are when you were sitting in the doctor’s office being told of your child’s diagnosis, you had only heard about it in movies or on Facebook. Now that it is your reality, it’s time to learn more about it. First, ask your doctor for guidance on where to get more information. They will lead you toward reputable medical journals and publications that will give you the information you need from a scientific point of view. If this information seems overwhelming, ask your doctor for a simpler explanation.
Next, once your child starts therapy sessions, ask the therapists what they’re doing with your child and why. Sit in on your child’s sessions to learn how to best relate and reach your child. Your child’s therapists’ knowledge is invaluable and will help you most when you’re feeling lost.
The first time I sat with my son’s therapists, I was a mess. They were there to tell me about his development percentages and the therapy to best meet his needs. I tried to take notes, but instead, I gently cried the whole time. I looked up at one of them and said, “I feel like the worst mom right now. Like all of this is my fault.” The sweet therapist put her hand over mine and said to me, “That might be true if you did nothing, but we’re here. That means you didn’t do nothing. You did something!” I’ll never forget what she said and how it touched my heart.
Even though your child now has a diagnosis, they are still the same child: yours. They need your love, patience, and kindness just as much as before the diagnosis, and now you know how to do that and what will help them the most. Since you can’t pour from an empty cup, you need to also show yourself some unconditional love.
By now you have probably blamed yourself. I know I did. I convinced myself that I must have eaten something, drank something, or did something that made this diagnosis my reality. Guess what? You did nothing wrong, just like I did nothing wrong.
This is exactly the child you were meant to mother. This is just the beginning of your wonderful journey with lots of ups and downs, surprises, and yes, love.