I called you today, friend. You knew today was the day. The day of the appointment. You told me that whatever the outcome I should call right away, or at least text. You said you would be right over. Like the true friend that you are you said I could cry and drink wine and we could talk through all my fears. I want to thank you for that. I needed it. Just knowing that you care and love my son like your own is the true testament to our friendship.
Well, here I am. We are home from the appointment that we hoped would relieve our fears about our son. It took all my emotional strength to see you after telling my parents the news. You knew the doctors and teachers were throwing around words like “autistic” and “developmentally delayed.” You knew I refused to believe it. You refused, too (and I appreciate that more than you will ever know).
My life was changed forever
You and I reassured each other this would be fine. He was definitely a late talker, possibly even a late bloomer. We found comfort in the fact that boys often develop slower than girls. We shared stories of other toddlers who flapped their arms and lined up toys (which often are early signs of autism) and turned out fine. And yet, you knew my hopes were wavering. The doubt was building.
Today, after three years of worrying, hoping and refusing to see what was right in front of our eyes, the psychologist said my son was autistic. She described him with words like “severely disabled” and “delayed.” She said he will probably never talk or be potty trained. His future is unknown, she said.
In a 90-minute appointment, my life was changed forever. Just like that.
And now, I am telling you that my son is autistic and his future is unknown. Your children are going to grow and thrive. Mine might not. I feel that fact like a hundred pound weight on my chest. My world is shifting and I don’t know what this will do to our friendship.
I realize this is hard for you, too
I am turning to you as a struggling mom and friend who feels her baby is broken, and I don’t know how to fix him. Tell me how to maintain hope. Tell me how to get through this.
I know you are struggling, too. You don’t know what to say to me. You don’t know how to help me. We had a vision of our children growing up side by side. My future is different now.
Here is what I need
You are my best friend—the person I turn to when I am hurting. But this is uncharted territory. My needs are more extreme. Considering how this change has, and will, impact our friendship, here are the things I need from you as I raise this special child:
1. I need you to give me time to grieve. I pictured a little boy with a future that won’t match up with reality. Go easy on me and give me some time to accept this. I love your optimism, friend. It’s one of my favorite things about you. Just not right now. Be patient with me as I work through this.
2. I need you to give me reassurance. I need to know that you will still be my friend. I’m part of a new club now—the Autism Club. My circle is changing. I need to know that even if I pull away for a while you will be here waiting for me. Reassure me that our friendship is the one thing that can remain real. I feel like so many people in my life are afraid of saying the wrong thing. They are walking on eggshells around me.
3. I need you to avoid asking me questions about his future. I don’t know if he will get better and I don’t know what the future looks like right now. I can’t take those questions because I don’t know the answers. You are looking to me for hope and it’s gut-wrenching.
4. I need for you to stop telling me stories about kids with disabilities. It seems like every person I know is suddenly an expert on my child’s disability. I am constantly getting emails and phone calls about cures and remedies. I know you want to help me by fixing him, but I can’t hear about your Aunt Carol’s daughter’s autistic neighbor right now. I’m sorry.
5. I need you to listen to me. I need you to call me or come over and sit with me. I need you to ask me about my day. My world is doctors, therapy and insurance companies. I can’t talk to most people about this stuff and worry I’m losing my sanity and my identity. I am now the parent to a disabled child and don’t feel like I fit in anywhere anymore. Please listen to me go on and on about this. I need that more than you’ll ever know.
My child’s disability feels so huge right now, but I believe that one day things will be better. My family is going to get through this and, when that time comes, we will be stronger than ever. I want you by my side as a friend and an ally. I can’t tell you for certain what “better” looks like right now. I just know I need you in my life. Please be patient with me as I paddle along this journey.
Kate Swenson is a mom to two rambunctious boys, one with nonverbal, severe autism. She shares a glimpse into their lives in an honest and uplifting way at www.findingcoopersvoice.com. She is also a digital project manager for the PBS website NextAvenue.org.