There’s something I’ve wanted to share here with you all for some time now, but was having trouble finding the words. Just the thought of writing it out was too overwhelming, so I closed the door to it for quite some time because I knew I wasn’t ready– but I read a beautiful post recently, something my husband actually sent me, that inspired me. This post, this raw & vulnerable post, was written by a mama going through the same situation and it’s helped give me the strength I needed to finally be ready.
To preface, I just want to say that we didn’t keep this private for any other reason than we needed time to process and needed to give attention and focus to everything we were dealing with— also because it’s about my daughter, Ivy. Anything I do, say, or post regarding my kids, I do with intention, awareness, and respect for them.
We’ve decided to share now because, after all this time, we are in a good place. We are adjusting. We are making so much progress and it’s a part of our daily life that I want to be able to mention or share freely moving forward.
In October, after a series of evaluations, Ivy was diagnosed with Autism Spectrum Disorder (ASD). She had been going to speech therapy prior to this and it was there they suggested further testing. Of course, cue Covid, and speech & testing were put on hold. Then, as we approached her 3rd birthday, we knew she was struggling and that it was time to take those next steps.
Maybe I was in denial, maybe I just didn’t know enough about Autism to recognize the signs, but I thought we would be told it was just a significant speech delay or some other mild developmental delay until I got the call.
Ivy has Autism.
It wasn’t what I was expecting. I didn’t know what to do. I didn’t hear much after that. I found Tom and let him finish the phone call. I went to my room and cried. I cried not because Ivy has Autism, but because my mind instantly flashed to her life ahead. As a parent, you never want your child to struggle in any way, so my heart broke— broke because Ivy now had a challenge she’ll have to live with every day.
This is something I understand all too well having lived with an incurable autoimmune disease for almost two-thirds of my life. My mindset in that regard is that it is something I live with, but it does not define me or who I am. This is the mindset I hope to instill in Ivy, as well.
For those also unfamiliar with ASD, broadly, it refers to a wide range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication. According to the Centers for Disease Control, autism affects an estimated 1 in 54 children in the United States today. [Edited: I had previously included an informational quote here, but have been informed the website I sourced the quoted information from often shares information that is harmful to the Autism community; therefore, I’ve decided to remove the quote until I’m able to research this further. I apologize if you found the quoted information offensive or harmful, as that was definitely not my intention. Thank you for your grace & understanding.]
Since her diagnosis, things in our household have changed a lot. Ivy started an ABA (Applied Behavior Analysis) therapy program (or “school” as we call it) that she goes to Monday-Friday each week (~30 hours). This was a huge transition for her. Prior to this, she’d been home with me & Isla for 9 months due to Covid. We recently had her 3 month review, and her therapists are amazed at the progress she’s making. It’s incredible how much she has grown & learned in just a few months.
But through all of this, there are things that haven’t changed at all— firstly, how happy, bubbly, affectionate, and vibrant our sweet Ivy is. She has always had and continues to have the most personable, lively, and adventurous attitude. While Autism may bring struggles and difficulties we wish she didn’t have to face, those things do not define her, as I mentioned above. They are things she is learning to handle & overcome– things we all are. Nonetheless, her fiery and vivacious spirit is still present and thriving.
Secondly, and most importantly, our love for this amazing girl has not changed one bit. We adore her for all that she is— every quirk, every tantrum, every giggle, every struggle, every victory. She is our heart and soul and nothing will ever change that. I’m so thankful I get to be her mother– so incredibly thankful. The pride I feel for this amazing little girl is almost too much to be contained in my heart.
Moving forward, you may see me mention something regarding Ivy’s ASD or therapy in passing— I may share an accomplishment from her day, I may share when we are having a difficult moment, I may not share anything at all, but I have always wanted this page to be a safe space where I can share any aspect of my life with you, and that might now include this part of our life, too. And I will ask that you have patience and understanding, as we are still learning and growing each day.
However, my intention will never be to dwell on negatives, seek pity, or anything alike. I hope in sharing this it can help other mamas in the same situation by being a place where we share all of life, even the hard parts, and we are able to come here to encourage and lift each other up.
We also want to thank those that have been here for our family these past several months– you know who you are. The love and support we feel are so strong, it’s basically tangible. Thank you for being here for us, for your encouragement, and for loving our baby girl no matter what. It means so so much. Thank you. We love you.
Please feel free to reach out or post a positive comment below if you feel led to do so. Love & support are always welcome. And if you’re struggling with a similar situation and need encouragement, please reach out. One thing I know for sure is that we are all in this big ole thing called “life” together.
Love,
The Roe Family
K
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