It’s hard to know where to begin. When life ebbs and flows in tiny wakes, we forget it can be rough. When the wakes form into giant waves that send you reeling, it’s hard to remember your strength. Even when you’ve known the sea was building, you see the wave out on the distant horizon, and know it’s coming for you, that doesn’t mean the wave can’t crash so hard that your lungs fill with a sting that makes everything hurt; in that moment trying to breathe is useless. In that moment all you can do is wait for the wave to pass and then fight to get your head above water.
That’s what these moments have felt like. For a long time we’ve had good reason to believe that Ethan was on the autism spectrum. His speech is still pretty delayed (even though he’s surprising us all the time), he does not like making eye contact, he has tantrums and outbursts out of nowhere, he is completely impulsive, and loves the rhythms of repetition. We were not surprised to hear the developmental pediatrician say he has, “high functioning autism,” but that doesn’t mean it didn’t hit like the wave breaking in a hurricane. It doesn’t mean that even with our suspicions in hand, being clued in for the first time to the fact that there are things he’s going to have to work much harder at than most kids wasn’t crushing. Oh, the pain of knowing that there are challenges your child will face that you can’t fix or make go away! It is the deepest and most real pain.
Does this change anything about how we see Ethan? No. Does this change who he is to us? No. See the list above has everything to do with Ethan’s behavior and development and very little to do with his heart. He is the kindest child. He genuinely cares about those around him. He loves to be outside. Fresh air and movement are his love languages. Well, music belongs in that list also. He believes in himself, and he is fearless in the face of new challenges. He is tenacious and not easily deterred. He loves books, and he really loves Pete the Cat books. He memorizes them faster than most any four year old can. Words matter to him, and I think it’s because he’s had to earn every single one. He is the coolest kid! He has a smile that can take any hard moment or day and make it better. He gives the best hugs. He wraps you up in his arms and legs and lavishes all the affection he can on you. He is amazing. He is a gift, a blessing, and a joy. He always will be.
So what does this diagnosis mean? It means we will have access to tools that can help and equip Ethan for his life. Ethan will learn behavioral things and speech things, and we will learn how to be the parents he needs us to be. We will learn more how to meet him where he is, and we will learn what it means to come alongside him in the ways he needs.
This autism diagnosis isn’t a curse, but it is a means to open the right doors for him. When I think of it that way, I can see what good that access can do for him. I won’t pretend it hasn’t been an exhausting time trying to figure out insurance, evaluations, scheduling appointments, and hanging in on day to day life. It’s been hard. When I’m stressed, I don’t sleep.
Sleep has been elusive for me for weeks. That’s one way I know it’s time to step back and ask for help. I’m so bad at that, but I reached out to a friend named Kristal whose son has autism, and she told me it takes a village and welcomed me to talk with her anytime. That was the first thing that fought against the feeling of figuring it all out alone. That feeling, the feeling of community, took the sting from my lungs and is allowing me to breathe. The next big breath came when the ladies at the speech therapy place we toured spent hours each day chasing down our benefits and working to get us set up. They kept in contact and kept reminding us that they were going to make sure Ethan gets that he needs.
It’s hardest when you feel that lump that says not all is right, and it’s harder when you’re like me and hate asking for help. I’ve always had to go out and work hard for everything. I’ve never been one to be dependent on other people and have always only wanted to depend on myself (marriage was the first time that began to change for me). In the few weeks in getting everything rolling, I know it will take a village. I know that helping Ethan get what he needs will be hard at times, but I know we aren’t alone. I also know he has a daddy and mommy who will fight to no end to advocate for him!
Since the diagnosis, one of my great joys is to hear Ethan sing the song “This Is Me” from The Greatest Showman (link below). Everything in this song is a gift for where we are. He sings it with such conviction that it fills me with hope that if or when the bullies come, or he’s left out or treated differently, he will hold fast to every incredible part of who he is.
This is a diagnosis. Ethan is still Ethan, and I could not be more proud of the person he is and the person I see him becoming.