A few months ago, we had Easton evaluated because he was having some developmental delays and behavioral issues that concerned us. He was having a really hard time communicating with his words about things that were really bothering him and it was beginning to affect his everyday life. We made an appointment and took him in, with hopes the doctor would say that these were all normal behaviors but instead we were hit with a diagnosis that we weren’t quite expecting. High Functioning Autism.
While I’ve had a few months to process this, it was something that wholly consumed me for the latter part of the year and all of January. We had to wait for several follow ups and a panel of secondary opinions before we had an official diagnosis and the waiting was so difficult. As a mother, to hear that your sweet child is anything but perfect is beyond hard. I shut down. I didn’t want to work out, I didn’t want to go on play-dates, I certainly didn’t want to work or show up anywhere that would require me to smile. I never expected for something like this to affect me quite as much as it did and while I know this is no death sentence and that his diagnosis of Autism is mild, it was still such a tough thing for me to process and get to where I am today. I didn’t speak much about the grieving process to many people because on some level, it feels sort of silly to worry so much about it knowing that he is ultimately going to be perfectly fine.
Today, I’m able to openly talk about his autism without wanting to run away, I’m able to research and read and talk to his teachers without wanting to burst into tears. I’m able to advocate for him. This is a very “gray” territory, the diagnosis of autism is tough because it’s not black and white and for some, it’s hard to even believe or see that anything is different about Easton. I’m so glad we had the courage to get him help and that now with the right therapies and care of his doctors, he is going to be the best possible version of himself!
The night we found out, I wrote him a letter and I wanted to share it because I know so many others out there who are maybe facing this road and I want you to know, you are not alone. Your fears are valid and your strength is seen.
A LETTER TO MY SON
As I write this, I lay in bed, tears streaming down my cheeks. What does this mean for you? What does this label carry? Is it a label? How will you grow in your relationships? Will you love? Will you have children? Will you be able to make friends? What will other children say of you? What will moms whisper under their breathe while I endure your next inevitable meltdown. The worries compile and pour out in tears.
The truth is, I’ve worried about you for a while, Ive worried for you. My concerns that the behaviors and struggles we were seeing weren’t normal were verified today. The doctor read me, she saw the tears, her words, “let me get the developmental pediatrician” my head spun. What was she saying? Why is this making sense? But it doesn’t. But it does. It’s all right there. The constant battle about your oatmeal not being “big enough” isn’t because you’re a difficult kid, it’s because you can’t communicate. The worry that every time you growl at a kid on the playground isn’t because i have weird child, it’s because you don’t know how to interact with strangers on a social level. The concerns about your obsessiveness about small things isn’t because you’re strange, it’s because you need order to process life. It all adds up, but it doesn’t because you’re still so “normal”. You play, you love, you’re affectionate, you understand and verbally communicate on such an advance level that sometimes it blows my mind.
You’re not autistic, you don’t fit the mold, you don’t fit in that box that’s labeled autistic. But you do. In so many small ways, you do. Small ways that over the past year began to become bigger ways. I made this appointment to find solace in my concerns, to hear that all this was normal for an almost 4 year old boy. I made this appointment to reassure myself that you were totally normal. I made this appointment because in my heart of hearts, the very pit of my stomach, i knew something wasn’t right. I knew, and I knew that if we kept ignoring it, it wouldn’t go away. You wouldn’t wake up one day and suddenly communicate better or suddenly not be obsessive about how tigers growl or that “you’re not a dude”. I knew something was off. But you’re my baby and i love you. And I made this appointment today because i love you.
Our whole lives were altered today. With one appointment, one word. It’s not a death sentence, it’s autism. Its not severe, it’s level 1, ASD. It’s not cancer. It could be worse, it could always be worse. It doesn’t make it any easier. It doesn’t make me love you any less. It doesn’t change who you are. It doesn’t change who I am. it changes how we lift you up to be the boy, the teenager, the adult and the man you were always meant to be.
It doesn’t change our outlook on life. Life is precious and treasured, labels can’t take that away. So to my son on the day you got diagnosed with autism, I love you. Yesterday, today, tomorrow and forever, I love you.”
If you made it down this far, thank you! I know there are so many mama’s and families struggling with this and I just want you to know you’re not alone. I want to be an open book about our struggles and how life can throw curve balls. Learning to parent Easton in a way that he thrives and our family continues to thrive is a road we are learning to walk as we go. I’ll continue to share and please, if you’re a mama of a child with High Functioning Autism, I’d love to hear from you =)