So where do I even begin? Life is crazy, hectic, impulsive, overwhelming, stressful. So many other words can describe life in general for any person whether single, married, parents or child-free. We go day by day trying to juggle so many pieces of who we are or who we think we should be, trying to fit into the ideal world where things just ultimately make sense and feel right and ultimately we are satisfied with the journey and the end result. Yet here I am, it's almost 11pm and I'm typing this up while sitting in my bed, my husband snoring fast asleep next to me, and the hum of the baby monitor next to my side of the bed. Everyone is fast asleep except for this exhausted mama and yet I struggle to enjoy the moments of silence (well this level of silence anyways). I slowly let my mind shut off to drift off to a deep sleep. For a day that was not as hectic for our family, I still feel very overwhelmed and chaotic in my mind, trying to piece together each part of the puzzle so that it all makes sense and is in it's rightful spot.
So who am I? I am a mom of two boys, Bennett (5), and Brayden (3), and both have been diagnosed with Autism Spectrum Disorder. Brayden was 2 years old when diagnosed and Bennett was 4. Within the last 2 months I quit my job to stay home with them so that they can get the therapies and services they need to succeed. How did I get here? Well, this is our journey and the guts and glory of having children with special needs. I'll start with Brayden.
Brayden has always been unique in his own way. With both of my pregnancies I suffered significantly from hyperemesis gravidum. If you don't know what that is, it's morning sickness from hell throughout your entire pregnancy to put it bluntly. My first child, Bennett, ended up being an emergency c-section so I was determined with this second pregnancy to go completely natural for birth. I was told all of the statistics were against my favor, but for anyone who knows me, I do everything in my power to prove those theories wrong and am just slightly stubborn. On the day I was scheduled to be induced, I started having significant painful contractions minutes apart at 3am. Got to the hospital around 6am and was already 8 centimeters dilated. My OB was in doing another c-section so the midwife came in to check his position and the worst words entered the air: "breech". Immediately in my VBAC mind, I started to freak out and my whole body tensed, which when giving birth is NOT good for progression. They called an emergency c-section and since I was without medications at this point, I would go under general anesthesia and be put completely asleep for the birth of my second child. Thankfully, the OB provider came into the OR after the entire party of nurses, OR techs, anesthesiologists, etc. had joined us, and checked to see what station he was at. Brayden wasn't breech, he was coming out nose first, so one big push later and he was born, surrounded by a crowd of people, all except my husband who was still getting dressed for a c-section. Brayden came into this world with a bang and it didn't end there. While we were in the postpartum wing, our nurse accidentally set off the Code Blue button and we had a sudden rush of emergency personnel to our room. Brayden just had to be the center of attention. With his full head of brown hair, he looked like a mini mad scientist. It wasn't until he started putting on weight that the Einstein look finally started to disappear. Shooting forward through the next year, Brayden met all of his milestones for walking, crawling, etc, except for speech. He LOVED to babble and make sounds, but was never able to form words. His brother was also speech delayed slightly so we thought okay, let's see where this takes us. Once he turned 2, again, speech was very limited. He was full of sounds, just not actual words. We spoke with our pediatrician who suggested a referral to our county's birth to three program.
With both boys, I had taken the normal 12 weeks off from work and then had to go back. The boys were enrolled in what was supposed to be one of the top daycares in town and conveniently located near my job. MOST of the teachers were amazing and supportive and their curriculum supported individual growth and play. There's always the few teachers that we don't always agree with, but that's with every place. Brayden was happy there and was slowly making progress with social interactions and signing. They noted that he was generally a happy little boy and always joked about how when he went outside, the first thing he did was find a stick to carry around in his hands. They decided since he was age 2 it was time to move him up to the next room and were hoping he would find his niche and his voice and start to develop more speech being with older kids. Unfortunately, Brayden couldn't communicate his needs or frustrations and expressed this by biting. He was suspended (yes, suspended) for 24 hours due to a biting incident. First of all, what 2 year old doesn't bite? It's normal age appropriate behavior, especially for retaliation purposes. But nope, we punish the mother by making her take off from work and stay home for 24 hours. Exactly how does this punish the child? I can guarantee my child was NOT the only biter. I contacted his pediatrician because at this point I was becoming increasingly concerned with his lack of ability to communicate his needs, wants, and frustrations and was upset as a mom that a daycare would single out my child this way. While the pediatrician didn't feel it was necessary based on how social Brayden was, I asked for a referral to have him evaluated for Autism Spectrum Disorder. Even if the test was inconclusive, it gave me a starting point. Looking back at all of his behaviors as a baby, toddler and even leading up to this event, I knew he was on the spectrum. And as of March 2022, he received the official diagnosis: Autism Spectrum Disorder-Moderate to Severe. This is where the snowball event starts...where chaos ensues, and where mom guilt really started to kick in. Was it something I did during my pregnancy? Was it the amount of medications I was taking to help to make sure I was able to keep some foods down so he would grow properly? Was it the foods we fed him or something else we did? Since then our life has been both amazing and chaotic, and this is just the beginning of the journey.
Bennett. Where do I even start with this kid? He definitely has his mom's sass that's for sure but again, things just weren't falling into place that should have been. Bennett was a scheduled induction at 39 weeks due to "elderly pregnancy" as I was 36 when he was due. An induction when a baby is not ready doesn't usually go well and he ended up being a c-section. As mentioned above, with both pregnancies I had HG. My safe food with him was tacos for some reason. He was born at 12:01 AM on Cinco de Mayo so it ended up being pretty fitting. With Brayden I was able to breastfeed him until he was 13 months old. With Bennett, things did not go as planned. Not only were my OB nurses negative about my ability to breastfeed due to having PCOS, but with a c-section you are overloaded with fluids and it can hinder how fast your milk comes in. Bennett was also tongue tied so by the time we were discharged from the hospital, my nipples were bleeding and the thought of putting that vulture on to nurse made me cringe and cry. We ended up pumping for a bit but then switched to donor breast milk and formula. We didn't discover the tongue tie until 10 weeks of age so my supply was little to none at this point. He was diagnosed with plagiocephaly and torticollis around 6 months and was placed in a helmet until somewhere around 10 months. He was SO CUTE with his helmet!! But other than that, his development was amazing. His first word was DUCK (meaning Mom had to watch her swearing a little closer), and other milestones were met head on. He did have a speech delay, but was enrolled with Birth to Three and continued to progress with words and sentences. When it came time to enter 4k this past year, , we really noticed his lack of ability to focus and complete tasks. While some of that is normal for his age, it was difficult to have him do multiple simple tasks in a row, something he should be able to do. With the help of our pediatrician, Bennett was diagnosed with ADHD and started on medications. The first medication, a stimulant, created horrible aggression and emotional mood swings. I think now, finally a year later, we have found the right medication and hopefully the right dose for kindergarten this fall. But back to this spring. I noticed Bennett still being very oral seeking with toys, chewing on his nails, etc. I had spoken with the Occupational Therapist he was seeing to see what her thoughts were about Bennett also possibly being on the spectrum. While ADHD and ASD have a LOT of similar behaviors/challenges, I wanted to rule it out for sure. Well, Bennett was diagnosed in April with mild ASD.
So where are we at now with both boys being diagnosed? I have quit my fulltime job as a registered nurse to stay home with both kids since they will be starting school in the fall and in our small town we do not have daycare centers. Not to mention after our last experience at our last daycare, I'm done with daycare centers and kiddos with needs. (That's a whole different post though which I'll get to at SOME point). I'll be able to work remotely from home here and there for some extra income since us middle class people are "too rich" for assistance yet "too poor" to afford anything. My husband works full time as an "environmental service worker" AKA trash collector so his income is what we are going to have to live off from for now.
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