I’m ending the year letting go of the past. I’m starting the year with hope and new beginnings. One of the things though, I really need to address. It’s the one subject that I find difficult to talk about; how I didn’t follow my gut and PUSH harder or get second opinions when Em was little. We knew she was unique. We knew she had some delays and struggles ahead of her but until the day she “broke” all the professionals told us, she was “fine” and “normal”. We were silenced with the idea that we were “helicopter” parents who were overreacting.
When Em was a baby, I had a nagging feeling that something didn’t fit. I had a gut feeling my baby needed things she wasn’t getting. I even quit my full time job when she was a toddler to care for her better. Only to feel that feeling grow more intense and challenge everything I believed. Yet her doctor would tell me that it was me. I was “tired” or just “anxious” because Christian was such a mellow baby and child.
This child had some serious red flags. Yet because she was somewhat a social butterfly with her own language she managed to fall into the chasm of unrecognized autism. She chirped and squeaked. And Christian, Matt and I all became interpreters. She struggled with eye contact. She was a literal thinker. She didn’t sleep and when she did it was short and brief. Emelie had severe food aversions. It was more than being a picky eater. Yet, we were told she’d outgrow it and when she didn’t that it was just “her” normal. That we were great parents but needed to relax. I didn’t.
She stimmed. We didn’t see it as stimming. We didn’t think it was anything but looking back, she stimmed. She rocked and loved to bounce and swing. She couldn’t calm herself down and self sooth. She needed deep pressure. She didn’t hit her “milestones” on time and she was delayed. Yet, just as we ALMOST went ahead and got interventions, she started to hit them so we figured the doctors must be right and we just were seeing things not there because we so anxious and tired.
School started for her. I was beyond exhausted. Meltdowns were chalked up to “temper tantrums” and she was a “misbehaved” little girl. I cried every day. I thought I must be doing something wrong as a mom and started to slip into a depression. Little did I know that school was setting off the sensory overload and by the time she got to me, she was done and couldn’t take anymore outside stimuli.
She didn’t want to write, color, or work on reading. Yet, still, the experts kept telling us we were overreacting. Then something broke in our family. She broke. It was the best and worst day of my life. It was the worst because of the situation and backlash but the best because finally the doctors and professionals started to listen to us. It was all over chicken nuggets. Or at least at the time we thought it was. She was in sensory exhaustion. The go go go of her school that week and the anticipation of a fundraiser that night that the kids were participating in that was also go go go led to this sensory exhaustion. All she had wanted was chicken nuggets and I told her no. She snapped. She threw her shoe at me and started hitting me while I was driving.
I managed to not get into an accident and got her home. Once home I put her in her room after chewing her out about safety. Which led to more tears and she screamed more. After awhile she calmed down. We had to attend the event so we went ahead as promised. The night seemed to be going fine until right about time for us to go. She got hysterical. Like can’t see the person in front of her crying and screaming. Matt patted her face and she snapped out of it. She then just needed us to leave. Which we did and she slept hard for twelve hours.
Long story short, it ended up with a lot of phone calls and referrals and misunderstandings. Thankfully, people knew us. People knew this wasn’t the Em that they’d known. Yet, the doctors didn’t see Autism. They saw many things but always told me that she didn’t fit the criteria for a spectrum disorder. Even if I pointed out all the red flags every single appointment.
Now at one point, I’d worked with a couple of kids on the spectrum and kept asking because by now, I was trying to trust my gut and I couldn’t let it go. They always found reasons why she wasn’t. My gut kept telling me that she needed therapy. And she did get some occupational therapy but it wasn’t geared towards all the areas she needed assistance with; just some.
They loaded her up with meds that didn’t help her. One med out of ten meds did. She’s only on one original med. An ADHD med. The rest have all changed since her diagnosis changed. We felt so helpless and baffled. Changing meds. Upping doses. Having blood drawn, which was the wrestle mania event regularly for several years. Yet, something wasn’t right.
Teachers started to see it too. Not necessarily the autism but that the meds weren’t helping. More and more, my gut was telling me to look for a second opinion because after four years, Em was still struggling as bad, if not worse, than when we started. Something had to give or she was going to end up hospitalized. It was our nightmare.
We finally did get a second opinion. Em was just eleven and here this professional took me seriously. Looked at the big picture and said, I agree with you. She IS most definitely on the spectrum. I drove home from that appointment in tears. I felt vindicated. I felt Em was robbed of so much time to get therapies that could have benefitted her because she didn’t fit the stereotypical criteria that the other doctor used as her guide. This doctor looked at it from how girls present differently as her area of expertise was autism, bipolar and other youth mental health issues.
The emotions running through me were so overwhelming. Em thought she’d done something wrong. She’s always known her diagnosis. She hasn’t always understood it. And neither did we. But baby steps helped. Changing how we reacted and parented her was the key. Learning how to communicate as a family was where we started. There’s a lot of being patient knowing that we were and still are on a learning curve. Days that we still don’t feel adequate as parents. Sometimes wondering if we’ve “missed” something.
As we walk in this journey with Em one thing has remained constant; our love for her. We’ve never looked at her as less. Just different and unique. We had to learn to see beauty in her as she is not how we want her to be. We needed to come to her in her world and learn how she “works”. Every day is a new discovery. We embraced her autism and looked at it as both a challenge with the way it complicates her life but also as an integral part of her that we needed to accept.
We had to learn as a family to shut out the background chatter. Nod our heads at people who felt we were coddling her and do what was best for her. We had to let people leave our lives and inner circle that couldn’t handle us. We learned to pick our battles. We had to learn to balance. We had to learn what a lonely world it could be. We also learned what a wonderful world it can be when the right people show up in your lives. We’ve had ups. We’ve had some downs.
I liken it to a Cha-Cha. We’re constantly moving. Sometimes forward. Sometimes a step or several back. But we press on. We have to believe in her. Her resilience. Her determination. Her drive. We have to listen to her when she chooses to communicate. While she now can verbalize vocally quite effectively it’s not her preferred method. If given a choice it’s often by text and messenger because she can pause and think before she “speaks”. We have to encourage her interests. Sometimes we have to push her to reach her potential knowing that there is a fine line in the sand of being able to handle something. We also had to learn when it was best to let her regroup and walk away.
I will never have the daughter that I dreamed of. And I’m ok with that. I have the daughter that is better than anything I’ve dreamed of. She is so strong and delicate all at the same time. She’s become who is because of obstacles. She is more than a statistic. She is more than a number. She is more than a diagnosis. She is more than I ever imagined. She fights back when many would crumble and she crumbles when she can’t stand anymore. Only to reform herself into a person she can be proud of. Even if it isn’t right now, someday she can look back and reflect on her own abilities and see that.
She’s not afraid to cry and tell us she scared. She will scream her insecurities and fears out at the top of her lungs for the world to hear. She wears her true persona outwardly with very few masks. She may not have the confidence that the world imagines when hearing that word, but I see Emelie carrying a quiet confidence. Even when that confidence is nothing more than what her obstacles are and her determination to be who she is no matter what.
She’s got this. I’m just here with the safety net watching her learn to fly. Let this year end with the knowledge that we are letting go of the guilt and remorse of not “listening” to our parental instincts. No more what ifs or should haves or could haves. We are letting go of how she fell through the crack. Let this year begin with the knowledge that we are doing the best we can and learning a lot along the way. That we did what needed to be done and we support her as she learns to be Emelie and what that means.
Emelie gets to determine who Emelie was, is and will be. Not us. Not her teachers. Not a diagnosis. Not a label. The choices are hers to make. She gets to define herself.