Lyla & Xander: Part 1

By Lyla Novakowski

I am going to begin by saying that you are worth more than any diagnosis. The story of my son and me is much like the story of any loving parent and their child. There are giant successes, infinite more failures, copious amounts of coffee, and a lot more questions than there are answers. This is as much of a story about cerebral palsy (CP), autism, agenesis of corpus callosum (ACC), and 15q duplication syndrome (Dup15q) as it is a story about time management, filling out forms, and figuring out how to fight. Our story is also about the importance of mental health and parenting and why having an incredible spouse is as important as living in an incredible state that has Katie Beckett program. Most importantly it’s about having an incredible kid, who against all odds still proves today why he belongs here and how every day he never ceases to amaze me.

The reality is that my son’s journey to cerebral palsy didn’t happen because of stroke or trauma. Some would even argue that this alone would disqualify him from even receiving that title. That it would mock the whole diagnosis as much as his diagnosis of autism. However, as we go through this journey, I hope you can see why our neurologist and all the fancy people we work with say he battles these things. I hope you are open to trying new things—if it works, great; if it doesn’t, that’s okay too. Maybe you read this, and you don’t feel alone. That’s honestly why I am writing this—for other caregivers regardless of their children’s diagnoses. We can call this experience spastic CP or autism or maybe later we find another name to give this. Regardless what we call it, my child’s experience will be different than yours no matter if we sit under the same umbrella or not. As parents we share the common storm of late-night panic attacks, fighting with insurance companies, filling out so many forms that your hands cramp, and of course, my favorite, the IEP meetings and politely explaining to a room of experts why your son needs X, Y and Z even though X, Y, and Z seem obvious.

Systemic ableism is the worst.

I first found out about the baby’s enlarged left ventricle and agenesis of the corpus Callosum when I was 26 weeks pregnant. My first real taste of ableism was when our award-winning high-risk gynecologist decided to offer me a late-term abortion before even asking me how I felt about this information. It felt like a generic card she had in her pocket. ‘“Oh your baby is different; clearly it’s broken’.” How someone can react this way over a probability still amazes me. This systemic ableism continued after the prenatal MRI, as I sat in another room of experts all telling me how important all this testing was, even though I lived in a state where there was no support because we made too much money to qualify. And of course, they asked with that strange amazement, “So you’re continuing with pregnancy?” At the time Virginia had no Medicaid waiver so I guess it was common for people to give up before knowing he future of their child’s life. I don’t judge others, but I was and still am offended that my baby was counted out before he even took his first breath in the world. The neurologist did tell us we had a high probability of cerebral palsy or autism or maybe both, though the risk for seizures was low at the time, and he didn’t require a stent. A stent is neurological tube that allows for stronger blood flow to the brain. There are also many people in the world that have agenesis of corpus callosum, and you would never know it. The neurologist didn’t tell me that; I knew that from college and my brilliant husband. For that reason, we decided it wasn’t right for us to have a follow follow-up MRI at two days old, and we decided not to do the genetic testing at that time. I simply wanted to enjoy my baby and embrace him for the incredible human that he is.

One month into the world, and I wasn’t ready for it.

Our Early Battles:

GERD

Weight gain

Hypotonia/ Hypertonia

Pooping

Postpartum Depression

Sleep

We went through all the trauma of first-time parenting. He came early at 36 weeks so naturally there was no food in the house. We were sleep-deprived and confused. But we also battled other challenges too, things I wasn’t prepared for. Most of the biggest challenges I fought were cognitive struggles, like not realizing that I needed a pediatrician that didn’t need my baby’s challenges explained to them. You naturally think that pediatricians are experts in all things kids and all things surrounding disabilities. However what I know now is that there’s a gigantic difference between a pediatrician who has worked with children who have disabilities and a pediatrician who is well versed in your child’s disability; even when it’s rare, they exist.

The ableism continued when my pediatrician’s lactation consultant would repeatedly tell me that my baby was just lazy. What the lactation consultant didn’t consider was that the severe hypotonia was in his mouth. Latching was simply too much effort, and he was getting tired. Looking back, an Speech and Language Pathologist (SLP) specializing in feeding would have probably saved me a year worth of pumping and heartache.

About a month in with my newborn, I remember sitting there in complete tears looking at my baby who wasn’t gaining weight. For me, breastfeeding was important—but it was more about him getting breast milk than actually nursing. I grabbed some formula and told myself to just feed my baby. It’s fine. Later on I would pump adding probiotic formula. Keeping up with the supply almost felt like nurturing another child.

Still the hardest images for me to see. My baby is dehydrating because of GERD and Hypertonia.

Fast-forward eight months. With the help of incredible mentors, college professors, and friends studying to be therapists, My son was progressing really well.

Our battles addressed.

GERD—Elimination diet plus probiotic formula plus ranitidine (had I known better, I would have tried a pediatric chiropractor before trying the meds).

Weight—Ironically, soft baby foods aggravated his GERD, so we went with baby-led weaning around six months, and he did great with it.

Hypotonia/Hypertonia- There are some great tools that help build muscles in the mouth, mostly vibrating tools from ARK. This company has specializes in sensory toys and feeding tools that assist with lip closures. Full body compression massages with fractionated coconut oil and essential oils have also changed over time, but every night since he was an infant he’s received a massage for 20-30 minutes along with a bath.

I watched a massive amount of YouTube videos because we lacked access to a Physical Therapist (PT) In the beginning, tummy time for us was on my chest. I used my body to help him with his neck control. If he or I wasn’t sleeping, we were chest to chest. This lasted for several months. When we finally went on the floor, the GERD was horrific. So we went back on the bed. I grabbed a Boppy Pillow (you can also use a towel) and had it under his arms. We talked the whole time. This phase also lasted for a while. We then went back to the floor, again with a pillow. If he vomited from the GERD, I cleaned him up and cuddled him, and we went back on the floor. This lasted for a long time.

We started swimming about two hours a week around four months of age and eventually moved up to four times a week for two hours each day. Ideally you want warm water—around 98, 99.6 degrees is perfect. I would go during off hours and ask lifeguards to up the water temps. I’ve always been amazed at people who will be supportive heroes. We didn’t use floats; instead I would cradle my arms under him so as to keep his limbs independent but support his head above water.

Postpartum depression—I also battled postpartum depression at the time. I found volunteering at my church really helped us both because Xander got to play with all the staff while rocking tummy time, and I got to volunteer and connect with others. Also walking with my neighbor, Marisa who’s son battled autism changed everything for me because I found not only did we understand what our life was like but also we connected on so much more.

Pooping—I never realized I was teaching my kid to poop. I think something maternal sometimes kicks in, but I would put his feet on my chest then he made his poop face and, gently, I would lean forward and encourage him to poop. It’s gross, but it’s real, and this worked for him. I would later learn that inability to use his colon muscles was the biggest sign of our genetic struggles and our battle with cerebral palsy.

Sleep—getting those calories in and having them stay in was key, but our battle was also about controlling the GERD. Yes, we used a wedge, and yes, his crib was right next to my bed. Yes, I was very careful how it was placed, but no this isn’t considered a safe way to sleep. However, it was an extreme situation. Our pediatrician supported this, but again he was also kind of clueless. Later the solutions for sleep dramatically changed. I’ve learned that adaptability begins with us as parents.

We were close to words. He was almost crawling, and then he was doing it. He could finally sit up! Yes! He’s crushing it. We did it. We were doing it! Take that agenesis of the corpus callosum—you have been *pwnd*!!!!

Xander at 9 months still a little wobbly sitting up. But crushing it.

My biggest mistake.

No surprise, we didn’t beat it. I had no clue f the impact were making together. I had no clue about regression. I didn’t know that just because your child is able to do something today, without constant work they can lose skills. Sometimes it’s just the disorder. Sometimes it’s sneaky things like a tiny blockage in the ears. Sometimes it’s because the routine changed—tragically for us, it was all three.

I had never thought I would be a stay-at-home mom. That was never the plan. I loved my son with everything I had. However, I had a killer career in advocacy, fundraising, and volunteer management, and I didn’t see myself as an expert on child raising. Therapists were expensive. Amazing daycares were absolutely the way to go. Sound right? I couldn’t have been more wrong. I found the best daycare money could buy; literally these guys charged $1,800 a month for three days a week and claimed everyone had a master’s in childcare, and if they didn’t have a master’s, they would be more than capable. I was open and honest about my baby’s battles, and I vetted hard even going through the complaints about the daycare through social services. They had none. That should have been a clue. On the other two days I worked, my mothers-in-law watched my son. Great idea, right? Wrong.

Fast-forward three months. At work I was breaking fundraiser records and volunteer recruitment was increasing, important people were talking, I was making a difference—but I was quickly losing my mental health.

My son went from the 30th percentile in weight to the 1st. He was not crawling with the occasional pushing forward, and we lost all our “conversations.” I was exhausted, and he was neglected. I lasted three months; I should have left after a month, but I was so consumed by event management. By this point, due to massive developmental delays, my pediatrician told me we qualified for Infant and Toddler Connection. I found out that we actually qualified simply by his abnormal prenatal MRI. This is something that my pediatrician didn’t think to bring up. That’s right, that prenatal MRI is evidence, especially if you are showing even the slightest delays, that you should be considered for services. I asked Heath and Human Services (HHS) if we got the follow-up MRI or the genetic testing if either would help in applying for Medicaid. They said No—at the time just based off our income alone in the state of Virginia, my son would not qualify for Medicaid, but we could get reduced-cost therapy through Infant and Toddler Connection.

So the path was clear—it was back to work with my son.

I drove for Uber from midnight to 6am. I took care of my son during the day, sleeping from 7pm to 11:30pm. I started watching my friend’s child too. It still wasn’t enough—between the $700 a month for a one-hour hour-a-week session for Infant and Toddler Connection; my stepdaughter’s college tuition, which kept getting bumped up; on top of taking an $80,000 per year pay cut from my husband getting his salary cut and me being out of work—there were two options: get a divorce or sell our home and move into our in-laws’. We were a six-figure family with prestigious degrees and careers living modestly, and still we couldn’t cut it. The mountain of debt surrounded us. This was rock bottom.

How the power of gratitude led us to finding our space.

If I had to say the biggest asset my family has had in all of this, it’s gratitude. Gratitude in the darkest times is what keeps your eye focused on what means the most to you. It helps you see a pathway out. Some people much smarter than I say that cosmic energies get drawn to you. In college I had a strict gratitude policy. Its benefits were magnificent back then. So at my darkest place as a mom, I began to write every day what I was grateful for.

Things are were pretty bleak. I was desperate for anything, and my husband was looking for another job nonstop while we piled our life into my in-laws’ basement.

My mother-in-law used to run a daycare. This was an amazing space. We all stayed in one room, and Xander had an incredible space to do his exercises. I listened closely to our PT, and we innovated with the things around us based off his needs. I would also search Craigslist and Facebook Marketplace for great finds. He was back to gaining weight and back to meeting our inch-stones.

Xander at 16 months enjoying his mirror.

I started looking at things differently and seeing what he was drawn to. Cardboard boxes became towers. Stairs were core exercises and strength builders. Of course we went back to the pool four times a week. We tried joining some swim classes; some things were too advanced for us, even in an infant swim class, but we always tried and augmented when needed.

However, Virginia wasn’t our space. While we had the love and support of our friends, church, and family, I was always aware of the looks. I was aware of how people were responding to him. I was also aware that our routine, while awesome, wasn’t enough. We had to leave.

After months of waiting we finally sold our home with the most minor of profits—but life was a bit easier now, even though I was pregnant again. On a whim I decided we needed to go to my niece’s wedding. While in Texas, my husband got a call from a recruiter—Idaho? he said almost disturbed I looked at him with a dead stare and said, “You don’t know nothing about Idaho!” I started googling pictures and fell in love. Throughout my whole life I was told you couldn’t make a living or have a life in places like the Midwest. “Idaho is a nothing flyover state!” my friends said. I had no idea where we were going, we didn’t know anyone there, but I knew we had to go.

Ida-Home.

Infant and Toddler Connection carried the transition. It was almost seamless. We also picked up private therapy while we waited the three months to onboard. We figured the 15 sessions of PT that insurance would cover for my son’s condition would be okay while we waited. Our PT’s office called and told me about a program called Katie Beckett and that my son would absolutely qualify for Medicaid. I told her, “I’ll call, but I know we won’t qualify—we make too much, and we’ve been down this road before.” She said, “No, you really have to call.” That phone call opened the flood gates of amazing!

Thanks to Katie Beckett, my son now has access to 20 hours of intervention a week between PT, SLP occupational therapy (OT), Habilitative Intervention (HI) and his early intervention school. This is on top of all the love and support he gets at home day in and day out. We also have access to an incredible neurologist and geneticist. As I write this my son is having a three day at home EEG, as we found at he’s actually high risk for nighttime seizures, and it could explain some of our challenges. For us, the journey is round the clock, but it’s successful because it’s fun, integrative, and flexible. I get to enjoy my son, and I dream for him to have an independent life. I do believe he can find his voice, and inch by inch we get closer to words so that one day you’ll be able to understand him. While we work on helping him verbalize, he is communicating with his iPad. I believe one day he can hop on one leg. I believe he can learn to use a computer. In my home we say neuroplasticity is king, and the things he loves, be it the drums, his books, Sesame Street, or his swings, are part of this journey. In the background, Epsom salt, diet, K-Tape—all these things are a part of our success story.

A parent made this walker for his daughter and donated it to our PT, who then lent to us. It’s not pretty but it worked. You can also rent equipment at the lending library. Every state has this!

Kicking booty and taking names.

In this journey I’ve found my mental health is as important as my level of advocacy. Mine isn’t a life where I get to scream at my kid when he kicks my face at 3am. So, mindfulness and respite care are vital. Ever since my Community Service Worker (CSW) went back home and now has a fabulous career, we’ve been searching again and hope to find another person who can provide respite. So for now my husband and I take shifts to give each other a break. For us respite is at home, taking a nap. My husband reads fanfic, I do yoga. There’s no wrong way to do it—except don’t do any chores. We order food. There are no questions asked. No requests. It’s completely checking out for 3-4 hours. My Parents as Teachers facilitator (another national organization) really helped me understand that, as well as has given me so much in resources and support. I also do things like double up on language facilitation while cleaning, organizing, and cooking, something I learned how to do through my mom tribe.

These are the ladies I talk to every day. They empower and uplift. In fact, it was one of the moms from my tribe that encouraged me to write to you, so if you got through this incredibly long story, know that if you ever need a buddy, I am always happy to listen, even if our paths are different.

My previous experience in advocacy now comes into assisting in parents’ fights for their kids. I am the most blessed parent with a child who was given a monster of a mountain to climb. That mountain has only been achievable through support. By no means is my son cured, but he’s already proven, as our neurologist said, “…that with continued innovative work and determination he is limitless, and I’m excited to see what he will teach and show the world.” At the end of it all, I think the biggest thing I have learned is that while I’m not an expert in child-rearing, I am an expert in all things about my son. Just like you are an expert in all things for your child. I was chosen for this, just like you were. Whatever your beliefs are, no matter where you are, know that this journey is something beautiful as long as you give your fears to God or the universe, and let your heart be filled with love and respect for your incredible, amazing child. I pray you find gratitude for every inch-stone, all the simple and gigantic things. I know I am so thankful my son choose me to his mother, I pray find the same joy.

With love, support, and encouragement, and may God always watch over you,