What do you when you know something is wrong, but nobody wants to talk about it!

This story may not be for young readers! I am going to warn you here, this is a topic some are not comfortable talking about! And that is okay! This blog is about my son’s little boy parts! There is so much controversy over the topic of genitals, but this is not a story for debate. Your personal preferences on this topic are your own, and nobody can decide those for you! But this story is about my son’s circumcision, my preference, and a complication I didn’t know could happen!

The Circumcision:

Finding out you are pregnant (in my case) was such beautiful news. Scared, sure. But as I have mentioned before, knowing that I was creating a human inside me was one of the best feelings I would ever have the honor of enduring. The joys of parenthood seem to overshadow the decisions you have to make as a parent, the milestones you accomplish, and the obstacles you have to overcome. In my previous blog, I discussed our first emergency room visit, but lets take a step back and talk about the one thing everyone avoids bringing to the conversation. When you find out the gender of your child, your whole world is decided for you (in most cases) Pink for a girl, Blue for a boy. Not deciding to do a gender reveal? Then neutral yellows it is, Right? Sure, those are the visual displays that represent the entry into this world, but the further thoughts of gender are not as openly talked about. In the case of a baby boy, a bigger decision will have to be made upon the arrival of your new little man, a decision that NOBODY seems to want to talk about.

Being the young mother I was , and the “norm” of his generation being the only knowledge to base my decision on, I didn’t see a choice in the decision. My understanding of the norm, was to have my baby circumcised. Now, let me clarify here, I still to this day would not have decided otherwise, but at that time, when the decision was made, I had very little knowledge of medical advantages or disadvantages, possible complications or benefits. I was told for hygienic reasons, little boys were circumcised. Im not going to dive into the details, but I knew of males who were on either end of that choice, but for my son, for Puzzle, I was going to opt in. This was the scariest decision of my life, not because of the decision itself, but I was terrified of putting my son in pain! I cried in that waiting room the entire procedure! Practically grasping my child like I would never see him again, as they took him from my hands for the first time since I had given him life.

Bringing down the tempo now, Puzzle was fine! Procedure successful and I knew the pain he had just endured would soon be forgotten. Or so I thought!

Fast-Forward to the future a little, Puzzle was 3 now. I had him enrolled in a public preschool program; ELC (Early Learning Center) that was taught out of our local elementary school for 3 and 4 year olds. The program was to ready and prepare preschoolers for Kindergarten who needed a little extra help. Of course Puzzled was not delayed when it came to the knowledge he had entering kindergarten, but he was delayed in other subjects. He still had an expressive/receptive language disorder; ie non-verbal and a minor sensory processing disorder. He was not skilled in everyday tasks, such as bathing, toileting, safety awareness, etc. But he was Autistic and would need more attention than a regular general education kindergartner.

The major difference between my child and others at his age, besides the obvious verbal delays, lack of eye contact, and excessive stemming, was his lack of potty training. Puzzle was (and to this day is) in diapers. I had tried several tip’s and tricks provided by moms, blogs, how-to books, any advice I could get to potty train my son. The problem was, he was not a “normal” child, with “normal” capabilities. There was no potty training literature on “how to potty train a child with autism”, though I am sure there are some now-a-days. Still, no two children are the same, no two develop the same, and for the sake of my son, Puzzle still refuses to go completely diaper free. And that is OKAY!

At about 3 , I had tried everything, including spending full days in the bathroom, with a completely nude child. We ate, we drank, we played in the bathroom, weekend after weekend trying to get him used to at least urinating in the toilet. AND HE DID! Not voluntarily and not every time, but to this day, if instructed to – he WILL pee in the toilet. HOWEVER, the purpose of this blog: My son seemed to be having more than just a problem urinating in the toilet, he couldn’t “aim” it in the toilet! As he grew older, and his “little boy parts” grew too, he seemed to be spraying upward, above the toilet, out of his diapers, something did not seem right about his complications while trying to go #1. After quite some time, it almost seemed painful for him to go. He started not wanting to, and when his bladder was really full, he would push his little parts downward in complete frustration! I knew something seemed weird, but I just plain didn’t know enough about the subject. It wasn’t until a very messy blow-out with a #2 diaper that I truly knew it was time to do something! As I was cleaning up the messy, front-to-back mess my son had just created, spilling out every edge of his diaper, I was cleaning up his little boy parts and I noticed the skin on top of his “thing” was pulling really hard. I contacted his pediatrician and knew I needed to get this checked out.

We were referred to a pediatric surgeon and had a diagnoses. He had developed a penile bridge, w/out nerve attachment. This just means, over time, his extra foreskin after his circumcision had reattached a small bit of skin to the head of his boy parts. Apparently very common, we had been lucky that there was no nerves or major veins running through the bridge. After some insurance manipulation, arguing, and a few nights of angry tears, I was able to get approval for the procedure as medically necessary, not just a cosmetic procedure. Because the pain and hygiene was causing dysfunction of an already difficult toileting situation, insurance was going to cover the correction.

Post Surgery:

With the procedure a success, a new problem, a new puzzle had been created. My now sensory sensitive toddler, had stitches (dissolving) on his little boy parts, that were going to need time to heal, without interruption, so this problem did not occur again. I had to create another Tip & Trick to make sure my son would not touch his healing ouchie, but still function in his everyday activities and be able to attend school. The only thing I could think of, was a onsie. Throughout his infancy, like most babies, they live in onsies! so convenient, they cover their whole bodies, and usually full access to changing a diaper. But my child was 3, they rarely, if at all make onsies in a size 3. If I was to find them, how well would they work? He was strong enough at this point that he could just pull on them and unsnap them and oops, hands in the pants. There had to be another option:

(TIP & TRICK #3)

I took a bunch of old work uniform t-shirts I had, they were large and v-neck. I turned them backwards, and placed one of Puzzle’s T-Shirts and paid of jeans and placed them on top of my T-shirt and created a stencil outline of this outfit size. What I was left with was a full body suit stencil with a v shape in the back. I sewed along the edges, cut off most of the legs and made what I called his “Peter Pan onsies”. Having the V-neck in the back allowed easy capability of pulling the body suits on, like a leotard and he was not able to pull them off himself. Because of his strength I couldn’t use a clasp or set of buttons in the crotch area, so I had to sew them up with leg holes.

Viola – I put the onsies on underneath his regular clothing, they were light cotton, breathable t-shirts and you barely noticed! He was able to go to school, function normally, and he never was able to pick his stitches!

Sometime’s as a mom I am overwhelmed with stress, scared that I wont know how to help my son. But no matter what I do what I have to, do what I can to make sure he is safe, happy, and as healthy as can be, no matter what that means!

It is definitely never easy! But loving him is. Stay tuned for more tips, tricks, and more medical issues, as even today (in real time) I am having to come up with crazy ideas to overcome the obstacles or current medical challenges!

Wishing you health & happiness,

Puzzled Mom