A New Diagnosis

The doctor said it. She said what I knew in my heart was true. I had been waiting over a year for this appointment and she confirmed what I have suspected since Joelle was eighteen months old.

But how can something you saw coming still hurt so much?

I knew when my second daughter wasn’t meeting her developmental milestones. As a nurse, I saw the red flags. At her eighteen month well visit, I brought up my concerns.

When her pediatrician wanted to take a wait and see approach, I knew what I needed to do. I called and set up her early intervention evaluation myself. We started speech therapy, added occupational therapy, and then developmental therapy.

I even took her to a neurologist to rule out medical issues. All testing including MRI, ABR, and EEG came back normal. Although that didn’t make me feel any better, because I knew what that meant.

I also requested her case manager place a referral for evaluation by a local behavioral pediatrician. We would wait for this appointment until three months before her third birthday. 

That day finally came. The evaluation was long and exhausting. She wanted nothing to do with following any of the doctor’s requests. She even threw a wooden puzzle piece at the her head out of frustration.

Thankfully, she missed. My daughter was over it, so I was getting life changing news sitting on the floor of the exam room. My daughter had decided that was the only place we could sit.

So there we were. It felt surreal. I don’t remember saying anything.

It’s like time took a pause.

My heart felt heavy and my stomach was in knots, but I wasn’t going to walk out of that room in tears.

Deeps breaths. I don’t like to cry.

She finally broke the silence and said, ‘I bet your wondering what’s next?’ 

I guess I had been so occupied getting us to this point, I didn’t think about after. She handed me a couple sheets of local resources and told me to call them.

That was it.

This huge diagnosis and all I get is a couple printouts?

There was no hand holding, walking me though what’s next. That was hard. That wasn’t how I expected it go. In my nursing experience, when you are given a diagnosis it is followed up with a solid treatment plan, maybe another specialist appointment, or further testing.

I got phone numbers.

That day I shared the news with our immediate family. But I’m still having a hard time truly processing it, saying it. What am I supposed to say? How do I share this with others, tell them what’s going on in our lives, when I still have so many questions myself?

I don’t want to mess it up.

Speak wrong, say something incorrect, or sound so unappreciative of life’s other blessings.

But this is hard. 

I keep asking, what am I supposed to do now? What next? It can be so overwhelming.

I also thought I had a good grasp on medical acronyms. But as I’m reading though the information given to me, there are so many words and abbreviations I’ve never heard of. What does ABA, BIP, SIT, and ADOS mean? These are just a few of them and my head is still spinning.

I need to know all this and I feel like I needed to know it yesterday. When I truly realized all I did not know, I had some big emotions.

Have I been doing enough?

Am I smart enough to navigate this new world? 

I have a lot of research and learning to do, but I will do it for her.

So here I am, almost 30 days after diagnosis, and I am still worried to plan our next move, because I don’t know if it will be the right one. I question, do I have all the information I need to make the best choice for Joelle? Then I get scared and wonder will insurance cover it? And if it’s during the day, will I be able to get her there?

The questions don’t stop.

Fear of the unknown is real, but so is my unconditional love for my children. A medical diagnosis does not define who she is, but I can’t pretend it doesn’t exist.

When I look into her beautiful blue eyes, hear her laugh, or see her smile, all the noise in my head settles for a bit and my heart smiles. She is my baby and I am ready. 

So I am just going to hug my beautiful, loving baby girl, because she loves those deep pressure hugs from mommy, and get this new life journey started by finally saying it…

Joelle has autism.

Written by, Laci Mayneirch

Laci Mayneirch is located in Central Illinois. She has been married to Mark for 11 years. They have two beautiful daughters, Molly (10) and Joelle (almost 3). She is also a full time school nurse! Their family is just beginning Joelle’s journey with autism. 

Interested in writing for Finding Cooper’s Voice? LEARN MORE

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.