And then IT happened…

Today’s submission comes from Melissa Harris. At just 24 weeks into her pregnancy, her son Sam was born. He entered this world way too small (just 1 pound 12 ounces) and way to early – but don’t tell him that! He has been a force to be reckoned with from day one. Now, Sam is a healthy and thriving toddler with very little to show for his micro-preemie status. As for her, Sam turned her world upside down. She went from being a career focused individual to a work-from-home mom. Her kids are her pride and joy – but don’t get her wrong – it is not all craft projects and kid perfection at her house. Far from it. Her blog is a place where she tell Sam’s story, how he impacts his big sister, and generally explore the perils of parenting. You can find her on TwitterPinterest, and Facebooksharing her stories.  

The other shoe finally dropped.

Ever since we brought our 24-weeker home from his 95 day stay in the NICU, I felt like a giant shoe was hanging over my head, waiting for the right moment to come crashing down. I agonized over everything, sure that each little stumble or missed milestone was an indicator of something more sinister, lurking in the background.

At first, I fixated on his breathing. We had, after all, spent the last three plus months in a hospital with a monitor telling us how much oxygen he was getting and how well his heart was beating. The day before we were discharged, Sam’s heart rate and oxygen dropped so low he had to be bagged. The doctor’s assured me this was not a set back, but related to a feeding. I was pleased we were still going home, but on the inside I was screaming “But he eats at home too!”.

After a few months without Sam coding at home, I began to relax about his breathing and found something new to obsess over: his eating. We had gone from knowing exactly how much Sam was getting since he was being fed through a feeding tube or with a bottle to exclusively breastfeeding. Even though I could hear him swallowing, and he was gaining weight, I was sure that he was not getting enough nutrition. This fear lasted a few months until the doctor showed me that Sam had finally made the growth chart for his actual age – not just for his corrected age.

Around Sam’s first birthday, I found my newest obsession: Autism. I had heard all the statistics that preemies were more than five times more likely to get Autism than non-preemies. I started to see signs of Autism in everything Sam did. His smile wasn’t smiley enough. He didn’t make eye contact perfectly. He didn’t say “mama” every time he wanted me or saw me.

Of course, each time I started to convince myself of this diagnosis, someone with a lot more training and degrees would take one look at Sam and tell me to settle down. I would take their advice, until the fear would creep back in.

Life went on like this for almost a year, when one of my best friends, tired of my fear and obsession about the “other shoe” took matters into her own hands, and gave me my very own “other shoe” – to drop when I needed to.

othershoe
Something about this gift just made me smile, and finally allowed me to relax. I was now in control of when that shoe would drop. I took a deep breath and decided to let go of all my fears and just enjoy my amazing little man.

That calm lasted a whole two months. Yes, they were two glorious and worry free months, but they were still only two months.

Everything changed after my husband and I took a six-day, much needed, kid free vacation. Something about the time away allowed me to see some things with Sam I hadn’t been able to see before. It was suddenly clear to me that Sam’s language development had pretty much stopped and, in some ways, gone backwards. He was no longer responsive to his own name. He had lost words he had previously mastered. Sam only spoke in mimicry, nothing spontaneous or reciprocal.

I consulted with our Occupational Therapist, and as opposed to calming my fears, she validated them. She too had concerns with Sam’s development.

Things started to move quickly after this. In no time, we had failed a speech evaluation and Sam was not only in occupational therapy but now in speech therapy. In just three short sessions, people started talking to me about the possibility that Sam was either on the Autism Spectrum or Autistic. We were sent to a developmental pediatrician and walked away with an official diagnosis of Autism Spectrum and severe developmental delays.

The other shoe finally dropped. And dropped hard.

All of my fears and anxieties are now reality. Sam is no longer just the Anti-Preemie. He is now the Anti-Preemie on the Autism Spectrum.

My world has been turned on its heels once more. I am no longer the preemie mom that has escaped hours of appointments and specialists. I am now the preemie mom who has up to twenty-two hours of therapy a week with her son. My beautiful little boy, who has faced so much in his short life, now has new and unknown challenges ahead.

I want to stamp my feet and scream and cry. I want to shake my fist at the universe and say ENOUGH. Of course, this temper tantrum will do nothing to change the situation. Instead, I have to put my faith in my boy. I have to will him to improve. I have to give him the support he needs to be the remarkable little man I know he will be. And along the way, I will stomp my feet and cry just a little. And when that fails, I will snuggle Sam close and let the world melt away.

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About: Christina Yother (67 Posts)

Christina C. Yother is the founder and unofficial “Girl Friday” of Project: Underblog. Often known online as “Neena,” she is a wife, mother of three, and recent earner of a PhD. She (painstakingly!) wrote one of the first dissertations focusing specifically on mommy bloggers and how they build their online communities. She is avid reader of trashy novels, a drinker of too much coffee, and a night time romance writer. She blogs regularly at hooey!critic where no topic is off limits – including the time she was propositioned for sex on Twitter (true story). Project: Underblog is her attempt to put that fancy PhD and all its research to good use. You can find her tweeting frivolously @hooeycritic


Comments

  1. I can’t imagine how rough it must feel to not only worry so hard about your son, but then to be validated in your fears. But MAN, have you given me the best gift idea ever. The other shoe to drop? Brilliance.

    • Thank you Keely. This has been a very rough road – and one that I am sure will be bumpier before it gets smoother. As to the shoe… my friend Chris is a true genius. I am sure she would love to know that this brilliant gift will be used by others.

  2. I’m so sorry you and Sam (and the rest of your family) are going through this. I love your friend’s gift of the other shoe, and that because of it you got to experience a couple of months with less worry. I’m sure you have wonderful specialists and therapists helping you through already, but if they haven’t had you try it, can I suggest a two week limit to corn exposure? Especially chemicalized corn (corn syrup, high fructose corn syrup). It’s a loooong story that I won’t get into here, but my 5 year old, who is now much better, suffered from corn-induced autism for her first few years (as well as many other things) and it was crazy the difference in her when she was exposed to corn and when she wasn’t. The body isn’t meant to metabolize corn (and doesn’t, in its natural state) and so when it is metabolized, it can cause the nervous system to go haywire. Not saying corn avoidance it the end-all, be-all cure for autism, but it may help. It takes 10 days to clear the system of corn, so 2 weeks should give you a good idea if it will help. Especially with his premie history, his nervous system may be more sensitive. Can’t hurt to try, if it hasn’t already been suggested! Best of luck to you, and may I just say, Sam is so lucky to have been born into a family that seems so well suited to take the best care of him. It seems like you are a great advocate for him, and it takes a special Mama to have the guts to do that!

    • Thanks for the tip on corn. I am actually taking Sam to a non-traditional specialist next week to talk about his diet. I had read a lot about gluten and dairy free diets for kids on the spectrum, but not seen anything about corn. I will make sure to ask about that as well. I am honestly open to anything at this point to help him. If that means no more wonderful crusty bread in the house or sweet corn then so be it!

  3. Christina Yother says:

    I just want to reach out and hug you! I’m so glad we can share your story here. It is important for both you and other moms to feel like you have someone in your corner.

  4. Your little boy will continue to love you and amaze you and you’ll love and amaze him. You guys are one s

  5. …let me try again. You guys are one special team and I’m cheering you on! Sending you love and strength, my friend!

  6. Every time I get a new diagnosis for my older daughter (There have been three. So far.) I find myself going through stages of grief. It takes a long time for the label to mean almost nothing, for it to be pretty much insignificant in how I see her and her future. I know she is more than those labels and I’ve come to realize the labels get us to where we need to be to help her be the best she can be.

    Your love for your son is so clear in this post. I wish you and him all the best on this journey.

    • Thank you so much. I am trying to accept the label for what it is – a key that opens doors to help. It is just hard right now. I will try to remember that the label is a key…. the label is a key!

  7. Thank you for sharing this wonderful story that is so full of strength and love! Your little gal and guy are lucky to have such a wonderful mama.

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