‘We don’t need language to know what makes her happy. I want nothing more than to see her succeed.’: Mom recounts daughter’s journey to autism diagnosis, ‘She was made for our family’

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“Remmy.

Or ‘Remmy Girl,’ as I often refer to her. Rem for short.

I really love her name, but her dad wasn’t so sure about it in the beginning… his name is Chris. I’m Meagan, Remmy’s mom. I knew I had to have a unique name for a special girl. After a few days of begging my husband to name our rainbow baby Remmy, he agreed. It grew on him, and we love it. It truly is the perfect name for her.

Remmy is our second daughter, and she has autism. Moderate-severe autism, if we are using the scale. For short, we say she has ASD (Autism Spectrum Disorder). She is our rainbow baby; our son was due June 2015. We lost him in December… but here’s the incredible thing: Remmy was conceived in June 2015. Talk about timing! Our loss was — and still is — painful. But, we often stop to think that had we birthed our son, Remmy wouldn’t be with us. It’s like she was made for our family. She was meant for us and meant to be here.

Courtesy of photographer Amanda Tranmer

Remmy was born in March 2016, and it was the easiest delivery of all my children. Two pushes and she was out. I looked at my husband and naively said, ‘That was so easy, I can do that again!’ He smiled kindly and replied, ‘Oh babe, this is highly unusual. It’s not guaranteed to happen this way again.’ I’m pretty sure I rolled my eyes at him (sorry, babe!). When Remmy’s baby sister came along two years later, his words rang in my mind as I endured excruciatingly painful labor.

As I mentioned before, Rem is our second child. She has an older sister named Reece, and a younger sister named Rowyn. Yes, I’m that mom. My girls’ names all begin with the letter R, and each has 5 letters… what can I say? I appreciate symmetry.

Reece and Rem were two peas in a pod. I dressed them like twins (at the behest of Reece), and my world completely revolved around them — and still does. I was so enamored with these beautiful little lives we created, I gave them all of my attention, and was happy to do so!

Courtesy of MelBell Photography

As Remmy grew, she began missing milestones her big sister Reece hit on time. She wasn’t talking on her first birthday, she wasn’t making eye contact at eighteen months. Remmy played with toys the way I saw Asperger kids play with them —grouping by color, making straight lines, and playing alone. Remmy, unfortunately, also had a head-banging problem, and she ripped out the top layers of her hair. She cried often and was a fussy toddler. She didn’t like having her hair brushed, or teeth cleaned. She was also hyperactive, and wouldn’t stop moving. Did I mention that she skipped crawling and went straight to walking? At 8 months old?! True story!

Rem couldn’t sit still in a high chair or the car seat. She was constantly climbing our furniture, jumping, twirling, and moving. She was fearless — which is a great trait to have, except when she risked personal injury to herself because she couldn’t recognize danger. Her hyperactivity also affected her sleep patterns. For two years straight, Remmy only slept four to five hours a night.

These were the tell-tale signs of ASD.

Courtesy of photographer Amanda Tranmer

We now know that Remmy had a problem self-regulating, and these behaviors were perfectly normal reactions to that dysfunction, or neural disruption, in her brain. Rem is also a sensory-seeker, which means her body requires vestibular input, aka movement. In conjunction with ASD, Remmy also has ADHD (Attention-deficit/Hyperactivity Disorder), SMD (Sensory Modulation Disorder), GDD (Global Developmental Delay), and a sleep disorder.

Hold on. TOO. MANY. TERMS!

I’m sorry, readers… am I losing you? Am I confusing you? The terminology is overwhelming. I often find myself over-explaining the science because our family members and friends don’t really know what autism is. In fact, Chris and I knew only one ASD child from our small town, so we too were completely unfamiliar with any and all things autism. Unless you’re an ASD parent or caregiver, you don’t really know much about this special-need. Our society is seriously lacking proper education regarding neuro-diversity. So, I take it upon myself to share what I’ve learned. This determination motivated my husband and me to begin an Instagram page titled Remmy’s Wonderland! It is a gathering place for friends and family members to receive updates about our family, and to follow along with Remmy’s journey. Autism is our new frontier, and our account has grown into an advocacy platform. It is a place for education. A place to ask questions. A place to share stories. A place to talk to other ASD families for support. Come check us out!

Photo by DelaLane Photographer Amanda Tranmer

At this point, you’re probably wondering what the process for an ASD diagnosis looks like, and I’ll tell you now:

My family lives in Southern California, and unfortunately, autism medical-diagnosis are not really common, because CA lacks the proper programs, assistance, and support for ASD families. Let’s just say there are other states who better recognize autism as a medical, neurological condition, so they offer a lot more resources for families. Because we live in California, we have to fight a little harder to get help from insurance, too, and that’s a drag. Don’t get me started.

Thankfully, we found an autism center in our region, and it just so happens that our girls’ pediatrician & Remmy’s pediatric neurologist both work there when they’re not in-clinic. This. Was. A. Life. Saver.  Although we updated Remmy’s physicians about our suspicions of autism, they could not medically diagnose her with autism. We had to go to an autism center, where a team of medical professionals had to evaluate Remmy and achieve a medical consensus of ASD. Talk about a headache… referrals, referrals, referrals! More white coats and strangers to further traumatize Remmy (white coat syndrome is real, y’all). More paperwork. More time. More energy. More work. California, and the US in general, seriously needs to reform this entire process, in my humble opinion.

Courtesy of Meagan

Fast forward to June 2020 (because it took us that long to be vetted): Remmy is four, and we received the call for her autism evaluation. The pandemic has hit, and precautions are at an all-time high. There is panic at medical offices/clinics because nobody has much information regarding COVID-19. Special procedures are put in place for maximum protection, yet they are stressful and unfamiliar. Remmy cannot wear a mask, and thankfully our center understood that (forcing ASD people to wear one should be criminal). We were the only family at the center. No siblings and only 1 parent was allowed in at all times… it was definitely an odd scenario. As a mother, I was feeling all of the feels — stress, pressure, nervousness, fear, anxiety…

Remmy had to meet with a team of specialists over a three day period. We met with a pediatrician, a neurologist, a psychiatrist, an occupational therapist, a physical therapist, and a speech therapist.  We met in-person (two seven-hour days) and on zoom.

On June 17th, 2020, we were called to come back to the autism center. It was this day when our lives changed forever. I heard the phrase, ‘Your daughter shows signs of moderate-severe autism, based on our consensus. She also has Global Developmental Delay.’ I don’t remember hearing much after that. I instantly cried. The team generously and sensitively explained their findings to me. I asked some questions and cried through my sentences. I choked on my words as I grieved the loss of the life I thought Remmy would have. As a mother, I wanted nothing more than to see my daughter succeed in life. Knowing she has a lifetime of struggle ahead saddens me. This world can be cruel, and I grieved all of the difficulty she will face in it. What’s strange is that deep down, we already knew she was autistic. We knew, but having that professional validation really solidified the truth to me —but there is hope!

Photo by Christee Wuite

We are a family of believers, and we believe that God made Remmy perfect. He makes no mistakes. We cast our worries, anxiety, and cares upon Him, and He grants us His perfect peace. We know God will guide us as we navigate this new territory. The future looks a little different than we envisioned, but that’s okay! And you know what else? We wouldn’t have it any other way. Seriously. As parents, we are so lucky to witness mini-miracles every single day: when Remmy randomly shows us some affection, when she makes eye contact, or when learns something new, like a word or letter. We feel a new, fierce, protective kind of unconditional love for her we wouldn’t have otherwise known. We are more patient, more attentive, more protective, and more in-tune with her needs. We communicate differently, and I think that’s a strength. I know every gesture, cry, and trigger. We know what makes her happy and what brings her comfort, all without basic language. It’s incredible, and amazing to witness every day. Remmy has brought our family a special kind of joy.

So, what do our days look like, now? Chris and I enrolled Remmy in ABA therapy (applied behavioral analysis) five days a week for two hours per day, Occupational Therapy twice a week, special-needs gymnastics once a week (a great outlet), and we will soon be trying chiropractic care three times weekly for several months. We are in-between speech therapists at the moment (insurance battle), but we hope to get Remmy back in with a new provider quickly. Phew! Just refer to me as the family chauffeur.

We are nearly eight months new to this ASD territory, and we have a lifetime of learning ahead. The next time you see a child on the spectrum, extend them (and their caregiver) some grace. Please be sensitive, and be kind. Give them love, because everyone deserves that. As for Remmy, it’s her world, and we are just living in it!”

Photo by DelaLane Photographer Amanda Tranmer

This story was submitted to Love What Matters by Meagan from Southern California. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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