Prematurity

Join the Conversation on
Prematurity
1.7K people
0 stories
393 posts
  • About Prematurity
  • Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
    Newsletters
    Don’t miss what’s new on The Mighty. We have over 20 email newsletters to choose from, from mental health to chronic illness.
    Browse and Subscribe
    What's New in Prematurity
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Sarah Zellner

    To the Mama Spending This Mother's Day With Her Baby in the NICU

    To the mother sitting bedside in the NICU, I know this is not how you envisioned Mother’s Day. I know right now it hurts. There is no breakfast in bed, morning snuggles, or cuddling your little miracle all day while you gaze into their eyes wondering how you ever got so lucky. Instead, you woke up today and got ready to go visit your medically fragile child who is currently living in a neonatal intensive care unit. I am so sorry for this. The enormous emotional force surrounding Mother’s Day is not something you can just pretend isn’t there, and to not recognize the pain you are feeling would be a complete disservice to yourself. That being said, I want to assure you, motherhood is so much more than one special day a year. Embracing the unexpected, like you are doing right now, is preparing you for the days ahead. Motherhood is a neverending cycle of emotions. These days in the NICU are molding you into a new version of yourself, the very best version of yourself. You will walk out of this a different person. In my experience, you will have a new outlook and new appreciation for the smallest moments in life, those that most take for granted. You will look back on this first Mother’s Day and rejoice in how far your child has come. You will think back on how you had no idea how you were going to make it through this, but you did. You will have so much pride in your journey that the pain you are feeling right now, will be minuscule in comparison to the joy. So today, while you sit next to the incubator shedding a few tears and grieving the pregnancy you thought you would have, make sure to reflect on the fact that you are still a mother and motherhood looks different for everyone. Know that you are strong, you are amazing, and you have everything inside of you already to get through this. Happy Mother’s Day, mama.

    Kaden M (he/they)

    I Don't Judge My Sensory Processing Disorder

    If you are a parent of a child with sensory processing disorder, this article might help you. That being said, this piece is not just for you. It is also for the adults out there who have always struggled with regulating their senses, both diagnosed and undiagnosed with sensory issues, also known as sensory processing disorder (SPD). It can also be for those out there who have never heard of sensory processing challenges and came across my writing by happenstance, but are suddenly intrigued to learn more. SPD can occur on its own or in conjunction with autism, ADHD, OCD, or Tourette’s syndrome, among others. It can range on a spectrum, much like other conditions. Also, I am not a professional by any means, simply an adult in their 20s who discovered that they have had the condition in recent years. I have done research on it since, and the rest is based on my personal experience. I have always been labeled as “quirky” and a bit “hyper” and “spacey” as well. I was 10 weeks premature back in the 90s, spending the first six weeks of my life in the NICU. I will never know for sure if that contributed to my developing sensory processing disorder, OCD, learning difficulties, ADHD, and autistic traits, or if they came about for another reason. That being said, there is indeed a correlation between prematurity/low birth weight with conditions like sensory processing disorder, ADHD, and autism. So, what is actually having SPD like? Well, I can only truly speak for myself so here goes: For me and many others with sensory-related needs and challenges, SPD manifests as a mixture of being overwhelmed by the world as well as underwhelmed. This can lead one to be sensory defensive (wanting to avoid and dampen the sensory overload) as well as, at other times, to be sensory seeking (craving certain senses and needing to touch/taste/smell/etc, even at inappropriate times). SPD can also show up in the form of dyspraxia; this is when a child has developmental delays in coordination, including fine and gross motor skills, that go on through adulthood. They are often clumsy. My sensory processing disorder specifically involves all of the above. The presentation has also changed over the years as I have grown from infancy to childhood up to teen-hood and now well into my adulthood at 27 years old. I would say at this time in my life I am more of a sensory seeker. I keep boxes and pouches of fidget toys all around the house, in my car, and in my purse. I do this so I don’t pick my skin or do anything harmful as a means of releasing my craving for tactile sensation. I love to smell candles for hours and yet the smell of perfume nauseates me. I can stare at abstract art for long periods of time, having trouble shifting my attention away, and yet I struggle with visual-spatial processing, such as reading maps and parking my car. I am on edge by the tiniest of sounds, disrupting any sense of focus, and yet certain words jumble together for me, causing me to repeatedly say, what? I feel nauseous during blood draws and yet the pain of a tattoo is something I crave, an exhilarating thrill for me. I bump into walls and struggle to tie my shoes; I have never been one for sports, aside from distance running where I allow pure anxious adrenaline to take over. Ever since childhood, I have struggled to go barefoot. I need to wear socks the majority of the time in order to feel comfortable. The tags in my t-shirt are often too itchy; I typically rip them out. The feeling of sweat is gross to me and so is brushing my teeth. I fidget and need to get up often during work (although my ADHD medication does help with this part, so there certainly is an overlap between disorders). I am restless and yet often lethargic and fatigued. Loud sounds, crowds, and noisy bars are overwhelming to me. And yet I blast music in the car at an abnormally high volume. I gag at the dentist and feel sensory overload at the grocery store. At the same time, I love spinning and swinging and rolling down hills. I have always been a pen chewer and pen clicker in class; meanwhile, the sounds of fellow classmates clicking their own pens sends me over the edge. I need a 25-lb, fuzzy blanket to sleep soundly. The extra weight and pressure are soothing to my busy, sensory-overloaded mind. Sleep disorders, executive function issues, depression, anxiety, and eating disorders are also common with SPD. I can raise my hand and say I have challenges with all of the above, but my point here is that this is how SPD looks for me. Someone else may also have the same diagnosis, and yet their presentation may appear differently. For me, what’s most important I’ve learned in acknowledging my SPD is allowing myself to sensory seek when I need to (such as with fidget toys or smelling nice candles, etc.) or to bring myself to quiet calm places, weighted blankets possibly included, when I need to decompress from sensory overload. I do not force myself to go to bars and nightclubs (especially now, thanks COVID!) and I even sometimes wear socks and sneakers to the beach. I may get the occasional odd look, but the cool thing about being an adult is that I have the power to decide what makes me feel best. I choose to meet myself where I am at, with minimal judgment. I hope that this article either made someone feel less alone, or on the flip side, taught somebody something new. Just remember that everyone out there is going through some kind of struggle; many of us with sensory processing disorder struggle with our mental health, our ability to learn, socialize, and complete day-to-day tasks — so be kind.

    Community Voices
    Community Voices

    I hate Chronic Pain and Sickness, it never goes away, I had to call in to work because I just can't go, the pain is pulsating, I just want to be normal, if it isn't one thing with us, it's another, my body is GOING to make me rest, I noticed the other day how much standing hurt, I try and overlook my pain and sickness and be ok, and fine, but, I'm not and NEVER am.

    ***Just looking for support and
    care***

    I have
    Congenital Hydrocephalus,
    Retinaopathy of Prematurity
    Hypertonia
    Chronic Knee, Ankle, Shoulder Pain
    2 L5 S1 Discectomies
    Diverticulitis
    Essential Tremors
    Groin Pain

    #spoonie
    #suppport
    #care
    #LetsMakeNewFriends
    #themightylife
    #HighlysensitivePerson
    #ThePainGame
    #MightyTogether
    #noshame
    #CheerMeOn
    #MightyMinute
    #ChronicFatigueSyndrome
    #CheckInWithMe
    #TheNeurodiverseCrowd
    #DistractMe
    #AloneTogether
    #liftmeup
    #MultipleHealthChallenges
    #Chatspace
    #FamilyAndFriends
    #EssentialTremor
    #Insomnia
    #lonely
    #weare #MightyTogether
    #Lonliness
    #friendships

    4 people are talking about this
    Community Voices

    <p></p>
    3 people are talking about this
    Community Voices
    Community Voices

    <p></p>
    2 people are talking about this
    Community Voices

    Who knew going out for a few hours would put u in a major flare.

    Couldn't sit, couldn't stand, ever bump I hit driving hurt, etc, etc.

    Please don't say feel better, get well soon, this to shall pass, etc, etc.

    Just in need of support

    I have
    Congenital Hydrocephalus,
    Retinaopathy of Prematurity
    Hypertonia
    Chronic Knee, Ankle Pain
    2 L5 S1 Discectomies
    Diverticulitis
    Essential Tremors
    Neuropathy
    Possible RA
    Carpal Tunnel Syndrome
    Groin Pain

    People just don't get it, understand, care, etc.

    Got invited somewhere, probably not going to be able to move much

    They got mad because they needed to know if I was coming by Thursday, I said, depends on how I'm feeling, they didn't like that answer.

    Those to me, r so called friends and family.

    That is why I consider yall my friends and family

    #support
    #care
    #chronicpain
    #ChronicIllness
    #LetsMakeNewFriends
    #themightylife
    #MightyTogether
    #noshame
    #CheerMeOn
    #ChronicFatigueSyndrome
    #CheckInWithMe
    #AloneTogether
    #liftmeup
    #MultipleHealthChallenges
    #Chatspace
    #EssentialTremor
    #FamilyAndFriends
    #Insomnia
    #lonely
    WeAre#MightyTogether

    4 people are talking about this
    Community Voices

    Good Vibes please, as I fell last night walking to car after helping with Youth Group, as if I wasn't sick or in Pain enough.

    I have

    -Congenital Hydrocephalus
    -Retinaopathy of Prematurity
    -Hypertonia
    -Chronic Knee, Ankle, Groin Pain
    -Neuropathy
    -Essential Tremor
    -Diverticulitis
    -2 L5 S1 Discectomies

    Thank u all so much for having an App like this for someone like me.

    #MightyTogether
    #HighlysensitivePerson
    #themightylife
    #LetsMakeNewFriends
    #noshame
    #CheerMeOn
    #ChronicFatigueSyndrome
    #CheckInWithMe
    #AloneTogether
    #Upallnight
    #liftmeup
    #MultioleHealthChallenges
    #Chatspace
    #EssentialTremor
    #Insomnia
    #lonely
    #Support
    #weare #MightyTogether
    #FamilyAndFriends

    3 people are talking about this