Thursday, May 10, 2018

This is my Circus: Mommin' Ain't Easy

Reflecting on our Roller-coaster Life of Victories VS Failures

I'm not a perfect Mom, but I'm learning all the time. Nor am I usually the type of person to care about what people think. I'm comfortable with who and what I am, but as a mother, there IS a part of me that cares a little bit about what people think in relation to my children, because they are still learning how to be themselves in this world. They don't deserve awkward stares or harsh judgment yet, especially not based on one moment in time (sometimes not the most show-case worthy moment). But the funny thing is, even though a moment can be perceived to be horrific by general standards, it really may be a breakthrough juncture with victory lurking around the corner. 
In order to talk, you must first be able to make noise and WANT to communicate. A year ago, when Dillon was virtually non-verbal and only yelling at us in frustration, Patrick and I thought, "This is terrible." But a therapist convinced us it was wonderful news, because he was indeed communicating, just in-effectively. She taught us how to replace his yelling with words. Flashing forward 6 months, instead of screaming at me when I sing, he says, "No sing." Flashing forward almost 6 more months into the present, not only can Dillon talk in simple but complete sentences, he says, "Sing with me, Mommy!" "Sing louder, Mommy!" "Sing faster, Mommy." "Sing slower, Mommy" "Sing regular, Mommy".....as he comes to get close enough to look me in the eyes, anxiously anticipating the words about to escape my lips.  All this stemmed from yelling, a mechanism perceived as something negative.
For the longest, I thought Dillon wanting me to hold him all the time was a fleeting moment......and then he turned 3 and still wanted me to carry him everywhere and I realized we had some work to do. But in order to walk with me in a public place, Dillon must first have the drive and the confidence to walk in public. Up until about 3 months ago, that boy had never set so much as a toe on the ground in public unless it was at a park and even then, he wanted me to hold his hand at all times. Imagine me wearing Mabel and balancing my gigantic 45 lb 3 year old on my hip.......Then imagine tiny little Mabel walking everywhere and me still either carrying Dillon, or hoisting him up into a shopping cart......
The other day we had a break-through incident at Trader Joe's. It was wonderful, yet also terrible, chaotic, and confusing. To preface, my boy is an all or nothing kind of kid with a tenacity that can impress even the most experienced of therapists, who has a voice that can carry through a jungle clearer than Tarzan. 

Flexibility adjustment #1: I pick him up from school. He says, "Let's go to the zoo!!" I break the news to him that the closest we are getting to zoo animals today is looking at the painted farm animals on the walls of the grocery store. (This is an eggshell moment, since altering his expectations is always scary. In the past it would 100% trigger a meltdown, but we are making improvements in this area.)

Victory #1:  He gets out of the car all by himself for the very first time in his life!!! I'm so proud and sing him praises.

De-regulation incident #1: While he's waiting on me to get Mabel out of the car, he ootches over to the median and observes some bugs. "AHHHH!!! THERE'S AUNTS!!!" he screams, as he races around a couple of parked cars and back to me. During this time a by-stander thinks she's "helping me.......or society in general" by lecturing him, "No running in the parking lot, young man. You need to stay by your Mother." (to which he is terrified and runs even more to get away from her.....)

Victory #2: He walks up to the store with me (our newest normal), we get to the cart and I ask him as always, "Do you want to walk or ride in the cart?" To my surprise he opts to walk! (I almost fell over and died from shock, right there.)

De-regulation incident #2: While I was picking out some veggies, he decides it would be good time to push the cart himself, swiftly knocking several groceries off the shelf, and almost hitting two different shoppers. (It may have taken 30 seconds or less for this is to transpire.) I gently redirect him, which of course ruined his fun and crushed his new found confidence. "I just want to go home!! Let's just go to the red car!" he yells at the top of his lungs as he darts for the doors. I manage to catch him in the middle of the automatic entrance and convince him to stay and count the cows on the wall (to which he reluctantly agreed), and he demanded I put Mabel in the cart (to which I reluctantly agreed). 

De-regulation incident #3: Things were going great, until they abruptly weren't anymore and he again decided it was definitely time to go home, to which he bolted, then stopped and started whimpering. When he wouldn't come back, I had to retrieve him and he started yelling at the top of his lungs to go home, threw himself onto the floor in the middle of the aisle and grew roots. Carts were being forced to dodge the planted boy on the floor and after a few minutes I was forced pick him up. "We are going to pay for our groceries and then go home, " I promised. But his emotions where already too high for reason. "Just go home! Just go home!" Everyone was concerned or annoyed at this point. About 3 different people came up to us and tried to offer Dillon a source of distraction, which to most kids would probably work, but this only increased his stress and anxiety, since he is terrified of strangers talking to him and invading his space. A cashier then approaches us to pull us to her open register and get us the heck out of the store. ("Whew, it's almost over", I thought to myself, "We can do this."

De-regulation incident #4: While the groceries were being ringed up, a well meaning older lady who was probably in her 80's got about 4 inches away from Dillon's face and asked, "Would you like to me tell you a story?" and immediately proceeded into her story as if she didn't hear Dillon screaming, "No! No! NO!!!!!!" I gave her the "thanks but no thanks" response and tried to move on. But the damage had already been done. He jumped from my hip and sprinted for the door AGAIN. Concerned for his safety, everyone in a 10 foot radius started to corral him like a wild animal, to which he responded with horror and ping-ponged his way back to me out of pure terror. (At this point of de-regulation, Dillon loses ability to receive or express most verbal language.......Yay for Autism.........So scolding him would not only be further emotionally devastating, but he would also have no idea what I was saying. We are working on getting visual aids to help for situations like this.)

Comedic Relief (probably only appreciated by me at this point): I pay for the bill with cash, and while the cashier is attempting to count my change back, Dillon decides this is a good time to very loudly count backwards, "10! 9! 8! 7! 6! 5!.........." And Mabel is crying. The cashier's fingers are fumbling around and she's looking very stressed and attempting to recount the money, with much trouble. "You're not the boss of me; stop rushing me" she kind of jokingly directs to my little heathen. (I guess at this point it would have been more appropriate of me to pay with my card.)

Have you ever been on either side of this scenerio?
To digress, it was not what most people would call a successful trip to the grocery store, but it was the cracking open of a door that needs to be traveled through. A step in the right direction. The peeping of a skill that can be built upon, and build we will, I have no doubt. But since he has never walked in public before, we didn't even have a starting point until now. And in the in mean time, we will be breaking all sorts of social standard rules that lots of people wont understand. But some people will, like the sweet Mom of 4 at the mall this week who offered to watch Mabel for me while I chased Dillon down in the overcrowded food court and figured out a way to help him tune out the over-stimulating noise by focusing on a water fountain. I can't explain how much that gesture meant to me in a time of vulnerable desperation. 
Do me a favor, in honor of Mother's Day, let's all just offer non-judgmental support for one another and lift each other up in praise, because DANG, "Mommin' Ain't Easy".........and you never know..........that lady with the out of control kid at the store could be me.......and that out of control kid could just be a really sweet (most of the time), adorable pre-schooler with sensory processing issues who is trying to navigate through some really scary stuff in his world. And dammit; I needed some fruits and vegetables!!!

Friday, February 23, 2018

Letting Go of Expectations


I read once that the number one reason for being disappointed with anything in life is not because of the lack of quality of an experience in itself, but almost always because we tend to set unrealistic expectations. By limiting expectations and comparisons, life naturally happens and is appreciated for what it is.
Oh man, this has helped me in so many areas of my life, but was especially true when it came to feeding my babies. So there is this giant movement of "Breast is Best"; in my line of work, I'm completely submerged in it. And although it's true that breast milk is amazing and there will never be anything quite as complete, it's not for everyone for a multitude of reasons, moms and babies alike. It’s supposed to be easy, and for some people it is, but life is complicated. My favorite mantra is "Fed is Best", because let's face it, there's already plenty of reasons a parent can feel like they're failing, but being able to provide nutrition for their brand new mini to thrive shouldn't be one of them.
I mourned a little bit when breastfeeding didn't work out for Dillon and I. Let's be real, when those hormone levels are flourishing and intimate decisions need to be made quickly, emotional stakes are high. But then I held my head up and pumped every cubic centimeter of milk I could until it practically turned into powder 8.5 months later. Leading up to Mabel's delivery I tried to mentally prepare myself for a similar scenario. I decided no matter what happened, I was not going to be disappointed with how I fed my darling daughter. 
 
As it turns out, Mabel was the most patient yet determined little breast-feeder I have ever met. She ate and slept so good I actually had to set an alarm clock to wake her up to eat every 3 hours, which takes a ton a self-control to keep up! Patrick had it super easy (I.M.O.) and slept all night while this was going on, so I was sure to make it a wee bit harder on him by turning on the light with every session (he always says I’m mean…..maybe he’s right). Knowing much more about my body this go around, it was easier to fall into an effective routine (and SNS is a fantastic tool if you can figure out how to use it), but let’s be clear: there was nothing EASY about waking up every 3 hours to breast-feed AND pump for who knows how many days in a row (nature blurs all those lines for a reason), but Mabel totally loved it, which totally made it worth all the effort. She practically lived to latch. If she could be latched 23 hours a day, she would would have been, and I was completely okay with that, because I knew one day I would miss it. I'll never forget that one day after Dillon watched Mabel breastfeed so many times, he decided to try it out for himself to see what all the fuss was about and got dangerously close before I figured out what was happening and redirected him!! Ahhhh, the gift of imitation. 
Mabel co-slept with us until she 5 months old (I loved every second of it), and remained an avid breast-feeder (with supplementation) until 11.5 months old, when a nasty stomach bug robbed us of any remaining time we had left. My goal was 12 months and it drove me crazy that we didn’t make it! A great deal of determination and support is needed to sustain a milk supply and I am thankful for every single person who helped us be successful. I cherished every moment, took way too many pictures (that she will probably never want to see or even know about), and cried several tears when I knew that particular section of our lives was over. 
 

Why I loved it so:
1.    Convenience. I had warm milk ready and available to feed my baby anytime, anywhere. We nicknamed Mabel "Goldy Locks" for a while (definitely not because of her hair), because if she did take a bottle, it had to be the PERFECT bottle (that took a few painful weeks to figure out) and the PERFECT temperature (since she was so spoiled to her milk always being just right). And when I say “anywhere”, I mean she literally wanted to eat everywhere we went……. probably because it was one of her favorite things combined with the bonus of shutting out the world for a little bit, just to be with me.
2.    Instant comfort. Any time Mabel was upset or cranky or tired or overwhelmed, a boob was the magic solution. It really was enchanting for both of us. I bought about 6 different styles of pacifiers and she would never take to any of them, so comfort nursing was a big deal for us. When she was tiny and going through the witching hour?? Breastfeeding for the win! That time we spent the entire day in the ER under florescent lighting with constant interruptions for Dillon’s transient synovitis episode???? Breastfeeding for the win!
3.     Sleep. In the mornings when she woke up to eat, I would pull her into bed with me for "breakfast" and she’d always let me sleep until at least 11 am. Breast-feeding was also the way I put her to sleep every nap time (we took lots of naps together as well) and every bedtime (a great excuse to get to put the baby to bed every single night.....Patrick was so jealous). Sure, I had to stay up late to pump and wake up early before work for more pumping, but such is life.
4.     Bonding. How can I explain this part in a way to serve it justice? We went through so many stages together. Some were the sweetest times of authentic tenderness, like how she always melted into my arms and curled up around me like we were two interlocked puzzle pieces. Every occasion we were connected in this way radiated contentedness. Some moments were more playful, like her amused attempts at molding my face as if it was made of modeling clay or efforts at sticking her fingers in my mouth, then my nose, then forcing them back to my mouth and giggling about it (I think she has my sense of humor). Sometimes she would accidentally burp or make a funny slurping sound which would set us off into a laughing fit. The more I laughed, the more she laughed and then we would be laughing so hard, all prospects of eating were postponed for a while. She has spent many an hour perfecting her fine motor skills by isolating only 2-3 strands of my hair and running her fingers through it from end to end. Some stages were a little less sweet, like the biting and the pinching, but luckily we were able to find a way around those!
5. Confidence. My boobs were rockin' and not stoppin', if you know what I mean (but sometimes there were so rockin' that they were literally rock hard, and that wasn't as cool)! It's not that bigger boobs are the only quality that exert confidence, but the post baby body didn't exactly make me feel as comfortable in my skin as I usually do, and anything that helped was welcomed with open arms!
6.     Pride. I know it's just suppose to be a part of nature and nothing to brag about, but I really felt proud to be able to provide for my baby. Our bodies can do some pretty cool things!

Sunday, February 18, 2018

Unveiling Ignorance: The Other A-word. Chapter 1

Sometimes ignorance isn't bliss. Sometimes ignorance is just......ignorance. It was almost a year ago that we walked into a tiny room with life as we knew it (parents of a frustrated, speech delayed, extremely shy boy who needed lots of re-assurance), and walked out with a diagnosis that would change our lives forever (parents of a child on the Autism Spectrum). 
My perception based on limited past experiences with this disorder was lined with grim thoughts, and it was most definitely something that could never happen to my own child. To me, autism was a dirty word. It was life behind invisible bars without parole. It was scary, intimidating, overwhelming (which, ironically, is probably how Dillon was feeling about life every day in general). I didn't handle the news gracefully. I was rude to the messenger, and to be completely honest, it's because I was angry. Angry and fearful and sad.
I was angry that I felt judged when they asked why we hadn't had Dillon evaluation sooner. I was angry that I had to listen to a woman label all of my son's short comings, and overlook all his amazing qualities. I was angry that I felt like she made some things up, and twisted other things into something negative instead of just quirky. I was angry at myself for not biting the bullet and scheduling an evaluation sooner.
I was fearful that my son would be robbed of experiencing what I considered a "normal childhood". I was fearful for what this might mean for his long term future. I was fearful that this would be a label that haunted him forever with stigma's and associations.
I was sad that my hopes of Dillon "outgrowing this stage" were completely shattered. I was sad that his frustrations with life were stemmed out of being misunderstood and that this might be the case his entire life. I was sad to think that my boy, my sweet cuddly handsome boy, would struggle with things beyond what neuro-typical children already struggle with. I was sad that so often, my boy was sad.....or mad......or confused.
I was also motivated. Motivated to make his life and his future better. While trying to process my feelings, I also knew my boy (not even 3 years old yet) needed me to pull my head above water and teach him how to swim. But what the hell did I know about autism and how to raise a child with a neurological disorder, communication impairment, and social interaction challenges?? Nothing. I basically knew nothing. I was ignorant to my own son's learning needs and it was anything but bliss. It takes a lot of guts to admit that, by the way. We all want to think we know how to raise our children, that our gut will lead us in the right direction, but sometimes our gut should stick to things like digesting pizza, and being the best parent means putting our ego's aside to listen and read and seek and watch and learn from our own and other people's mistakes and be moldable.
Despite my inadequacies, the two things I knew I was still good at was loving Dillon unconditionally, and utilizing my resources to seek help. This is how our new chapter in life began.

Monday, February 5, 2018

Like a Mole Removal: Mabel’s Arrival

After extensive talks with my OB and a honest talk with myself, it was decided Mabel’s birth would be a scheduled c-section at 39 weeks gestation. It was a strange feeling coming to the realization that I would never know what it feels like for my water to break, or to “give birth” the route babies were originally made to exit, but I was looking forward to the promise that this experience would be much smoother than last time. However, I was also skeptical, a side-effect from working for years in the NICU and knowing too much about all the things that can and do go wrong. I worried many times during my early pregnancy about true knots and nuchal cords, as I felt Mabel doing way more flips and turns than Dillon ever thought about. She flipped so much and so fast that sometimes I got that cool feeling in my stomach that you get when going down hill on a rollercoaster. I prayed hard every day for an uneventful delivery and healthy baby.
The night before meeting our baby girl, I squeezed my eyes closed and tried to get a good night’s rest. Yeah right. Not only was it like trying to sleep the night before Christmas when you’re 8 years old and can’t think of anything other than sneaking a peak of Santa and the presents he brought you, Dillon also must have had a 6th sense his world was about to change, because he was up crying almost half of the night (a far deviation from his normal). Oh well, right? It was merely one more night of crappy 3rd trimester sleep before morphing back into the newborn routine, anyway.....and it was Dillon's last few moments of being THE baby, a concept that was barely even comprehendible for Patrick and I.
Leaving to have my "mole removed"
The morning of November 15, we rolled out of bed (well.....I hoisted out of bed) to get ready, cuddled with the boy, and left for the hospital to check-in for my majorly exciting abdominal surgery. They took me back to a small room in triage where I changed into a styling hospital gown attire and they started an IV. Patrick kissed my belly and felt Mabel move around from outside in for the very last time. "Can you believe our daughter is in there?" he said, as he had said many times before. To which I melted and eventually replied, “Wow. This is just really weird. Nothing about my body is telling me I’m ready for labor. I am completely comfortable, and yet we know for a fact that we are about to meet our baby girl in just a few minutes. It’s all so routine and nonchalant, almost like I’m just going to an appointment for a mole removal or something.”
Getting an epidural is much easier when you aren’t in severe pain and having constant contractions! I laid down and let the medicine kick in, Patrick assumed his role by my head, and the drapes went up for skin prep! Things were finally starting to feel real. We would hold our baby girl for the very first time any minute and I was completely coherent to remember all the details this time. I loved my Nurse Anesthetist; she was so responsive, quick, and most importantly funny.
Speaking of funny, Dr. B came in with his vibrant self and as he was cutting my belly open, he was already asking me when I’m going to have baby #3! What a nut. “Chill out, Dr. B.” I said, “I haven’t even near forgotten the last 39 weeks yet.”

Moments later, a quarter past noon, our beautiful baby girl was filling the room with the sweetest sound, a new voice the world has never heard before (weight: 7lbs 5oz, length: 19.75 in). Her nurse Patty, put her skin to skin on my chest and that little chunk reached directly into my heart and stretched it even bigger than I could imagine, as she pooped all over the place with her not-even-diapered-yet-self. Sweet, I know. But I didn’t care in the slightest. We were completely overwhelmed with instantaneous love, the kind of love that can’t be bothered by silly distractions like meconium. And if Mabel was a routine mole removal, she was the most precious wrinkled mole covered in hair (no, seriously, this girl still had lanugo on her backside and on the tops of her ears....it was so cute) and vernix (she was SUPER cheesy) I had ever laid eyes on.
And just like that, we were a family of four.......and niether kid knew it yet (insert devious laugh)!


 

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