6 things I allowed myself to feel after my son was diagnosed

November 8, 2017

This post is by Kate Cortelyou who resides in Nashville, Tenn. with her husband and two young children. She is a retired giraffe keeper turned stay-at-home mom. Her son was diagnosed with ASD in the spring of 2017. His diagnosis instilled a new passion in Kate who has been busy educating herself on special education rights and disability rights. 

When my son was diagnosed with ASD this spring, I felt my world crash in around me. There was nothing that that could have helped to soften the blow of being handed a diagnosis that still has so many question marks surrounding it. Everyone on this journey has a different story. Some stories are exceptionally more difficult than others, but every story matters. How you react to your child's diagnosis is for you and you alone to critique. I sent my kids to my in laws and cried and drank for two days. Then, I picked myself up and got to work. In a world where every aspect of parenting is promised to be judged by strangers or friends, here are a few things that you have permission to do without guilt:

1. Cry. Cry as much as you need to. Let it out. Grieve the life you envisioned for your child when you first found out you were pregnant. Cry for the difficulties you faced before you had an official diagnosis. Grieve for the life you are thinking is out of reach. Let yourself feel all these feelings. They matter and you will not move forward with a clear head until you do so.

2. Tell, or don't tell people. I'll never forget when my son's psychologist told me that this diagnosis was mine to do with what I wanted. I could tell everyone, no one, or select people. I grew up with an older cousin who lived with Rett Syndrome. My aunt was very vocal about Tricia's diagnosis and always willing to answer questions about it. Where was the opportunity to educate people if she tried to keep it a secret? We decided to tell everyone. I share our journey on Facebook, good and bad days. If the opportunity presents itself in public, I bring it up. Most strangers have been understanding and helpful. A few have not. And you know what? They don't matter.

3. Take some time for you. I sent the kids away to my in laws for two days. Then, three weeks later I took a trip to visit girlfriends without my kids or husband. Take care of yourself. Your child needs you and running on empty is not an option.

4. Say NO and learn to advocate. Various therapy appointments, school meetings and appointments will soon fill your calendar. Learn to speak up. If you don’t like the way something is done, say so. Demand action. You know your child best. If something doesn’t feel right or a therapist doesn’t mesh well, or a “supportive” person is anything but, leave it behind. Form a relationship with his or her teachers, therapists and doctors. They will be a part of your life for a long time. Be open and honest and keep communication going back and forth. You must stay involved. Your child cannot do this without you.

5. Stop apologizing. Do you know what kids are great at doing? Acting out an inconvenient times. Special needs or not, you have many of these cringe worthy moments in your future. I learned early on that I wouldn't apologize for my son's behavior and you shouldn't either. When I can see that my son is drawing negative attention to himself, I do my best to step in and let other parents know what is going on. I don't apologize, I offer information. "He has autism and struggles to interact with children he doesn't know. That's why he is blocking the slide and won't let anyone pass. He isn't trying to be a bully." Keep the explanation simple. In my experience, most parents are happy to join forces with me to help find a way for James and their child play together.

6. And remember. Your child has not changed, but your next step has. Yes, they now have a label you didn’t ask for. But they are still the same child you have known and loved all this time. You are now part of a community fueled by love. Give yourself grace and patience and welcome to this exceptionally challenging but amazing world.

The Autism Speaks 100 Day Kit for Newly Diagnosed Families of Young Children was created specifically for families of children ages 4 and under to make the best possible use of the 100 days following their child's diagnosis of autism.