My first born child.
My precious baby boy. My beautiful miracle. My goofy face, crazy active, super tough little man. I mean, come on… how could you not love this little face; albeit full of trouble and spitfire, but TOTALLY freaking adorable!
He challenged me from Day 1.
During my pregnancy I ended up with pneumonia an sicker than a dog during Thanksgiving. I also broke out in blisters all over my body which apparently was diagnosed as being allergic to the pregnancy and it magically cleared up as soon as I delivered him. About two months before my due date I began bleeding (which was later discovered to be my placenta breaking off in three different places) and was placed on strict bedrest until I went into labor four weeks later. He came into this world three weeks before his intended due date, and despite the issue with my blood loss and the damaged placenta Kaelob was still a strong, healthy 7lb 14oz baby boy.
A few years later we had been through two different surgeries with our litle boy. He had a double ingoinal hernia repair when he was almost 2 and complex oral surgery when he was 4. He was such a trooper and healed wonderfully from both, however it as just the begining on my road to discovering my strength as an avocate for my child. Just the process of getting referals and approvals to get Kaelob into a dentist that could understand his limitations when it comes to cooperating with xrays and exams was incredibly difficult. I faught for 6 months or more to get everything lined up when they finally just allowed us to go down to children’s hospital and put him under general anesthesia and do everything they needed to do at once. They ended up working on every single one of his teeth except for two. Root canals, fillings, crowns, caps…. you name it, this poor kid woke up with a mouth full of metal… and he still has half of it in there. My job has only just begun…
In Recovery Room with my baby boy.
Around the age of 4 years we began seeing troubling signs that my happy, bright eyed, adventurous little boy had behavioral problems. This came from the sudden struggle to keep him in a preschool. You see, my growing little boy couldn’t communicate. He ‘jibber-jabbed’ and waved his hands aroun very excitedly when he was trying to say something, but you basically got lucky if you knew what he was actually trying to say. This communication gap led to a lot of frustration and short fused temper tantrums which the preschool systems had zero tolerance for. They were not seeing the happy, sweet, loving, bright baby I have loved so fiercly since the moment our eyes met and I held him in my arms. They were just seeing his behaviors.
This was the first leg of a fast paced, bumpy, trouble filled, steep path downhill that still has yet to level out. Thankfully the pace has slowed down a bit, but we are still rolling, that much is clear. For years I have passionately battled for my son. He couldn’t speak for himself and I found a strong, powerfully maternal voice that was opening doors, providing resources and helping him achieve his goals one baby step at a time.
Although we still had tantrums and tears, we started getting hugs or he voluntarily held my hand… or his little sister’s hand. Although we still battled the defiance, we started to hear, “I feel…” statements from him and proper greetings when people would introduce themselves to him. Although he still struggles socially with his peers, he is surrounded by a strong support staff of teachers who go the extra mile to work one on one with him so that he can reach his academic goals.
It breaks my heart to watch him struggle and at the end of the day when my patience is tried time and time again, I am exhausted. Loving Kaelob is challenging because he requires SO much when you alreay feel stretched so thin. Where the girls just need a simple direction or two and a teenie tiny positive reinforcement waved before their eyes… Kaelob needs baby steps, listed expectations, prompts (verbally and physically), coping skill reminders, sensory input and outputs, verbal praise, mutiple reward systems set in place and a consistently structured plan. Just writing all that made me tired.
This year has been tough for him, trying to bond with the ‘older’ kids in his class has proven to be incredibly challenging for my sweet, lovable baby boy. The older kids have another way of speaking (sometimes harsh and crude), the older kids have other interestes and the older kids are smarter which are all things Kaelob has begun to pick up on and the more he understands, the more it hurts him. His self esteem has hit a record low this year and it breaks my heart that “mommy cant make it better”. He has to learn on his own to let mean words roll off his back, he has to learn on his own how to make new friens an be calm and socially appropriate… all by himself.
He started lying and sneaking and waking up in the middle of the night and hiding that he’s awake… let me tell you that just two hours into the day it is completely obvious that he did not get enough sleep, and once the day has started you are in for it buddy! There’s no going back, you just have to brace for the impact and keep on rolling…. and hope and pray you all make it through alive! Those days are rough. I feel like we take HUGE steps backward on these days because all those areas that were getting better, all those behaviors we had been working so hard on changing…. come back with a vengance. Tears, tantrums, anger, frustration, lies, hitting, grumbling, fighting, whining, negative comments… steer clear folks, because on these days you are destined to get caught in the turmoil!
Lately our biggest struggle has been hygiene. I get caught up in thinking he is grown up and beyond some of the problems and then we end up tripping hard over the very thing I thought we had gotten past. Hygiene being the biggest one of them all (so far). WIth a child who has Sensory Integration Disorder, having accidents at night …heck just having a boy, accidents at night are still fairly common; even at his age. However, he will pee his pants while playing with legos in his room, or out in the back yard playing fetch with the dogs. He will pretend like nothing has happened, heck he wont even act like he notices it until I point it out. Sometimes he lies and tries to hide it, sometimes total melt down hits at the point of realization and life comes to a hault until we can recover. It is so hard to communicate important issues like this with him because we try to understand if he doesnt feel like he has to go, or is just ignoring the fact that he has to go.
I have to admit, he isn’t just peeing his pants. It breaks my heart to admit that my 9year old son will poop in his underwear in the middle of class at school, will walk around with it all day telling people “Excuse me I am just farting.” and ignore how disgusting it must feel. He does it at home while playing quietly by himself in his room, He’ll do it while playing computer or watching a movie he earned as a reward for good behavior… He will sometimes hide his underwear/pants under his bed or in his closet until I notice his room starting to smell. It is on these days I feel like we have fallen the wrong direction…it is on these days I feel like I must be doing something wrong because we are facing this problem yet again.
I have a great team of people working side by side with me to help my son, I’m not particularly writing this post to ask for advice, but to just express the raw, exausting truth behind loving Kaelob. It isn’t easy all the time, and today was one of those days. When bedtime consists of stomping down the hall, growling and screaming, hitting and throwing things, lots of tears and very little words… my heart breaks for my sweet lovable, miraculous baby boy and I hope and pray one day he can find a way to communicate with this world, until then I will love him with every ounce of energy I have left.
Welcome to my world
…the world of Loving Kaelob.