When our little monster was born, we knew right away that something wasn't right. His fingers and toes looked different, and he didn't sleep as much as you would expect a newborn to sleep. I woudn't say he was any more alert, but he spent a great deal of time awake.
Just before he was born, we had hired a live in nanny to help with him, as I have said before I'm physically disabled and sometimes need help with a super dependent infant
As he has gotten older, he saw many different specialists, as we tried to find out what it was that made his hands and feet so unusual, and why he didn't sleep. we later found out it is a form of skeletal displaysia, called Brachydactyly.
At about 6 weeks old, we came home from work (yes, I did work at that time, and still do to an extent, but more from home now) and he was not behaving normally. We took him to the Emergency Room to find out he had a brain injury indicitive of shaken baby syndrome. At first they said that they couldn't outright say he had been shaken, but they couldn't say he hadn't either. That added a new complexity to our little man's life. It was later determined by the police, and CPS, and an infant neurologist that he had, in fact, been shaken. Charges were filed against the child care provider, and I decided to stay home on a nearly full time basis. After that incident we noticed that he started to have these spells that the doctors all thought were seizures, but after EEGs, it has been determined that they are not in fact seizures, but we don't know what they are. it's one of his quirks that we may never uncover the cause. He still has them, although with some medical intervention, not nearly as often as he used to. he has gone from 10 - 15 of these "spells" a day, down to 1 - 2 per week.
As he got older, and was growing much faster than expected physically, he was not progressing developmentally. Like, at all. we still had a newborn, he wasn't holding his own head up, he wasn't sitting, or babbling, he just flopped around and laid wherever he was placed. now don't get me wrong, this wasn't the, lie the baby down and walk away sort of situation. he would not tolerate being put down in any context. the instant he was no longer being held, he would be screaming. if he was asleep, he would abruptly wake up and we'd have that banshee scream that anyone that has a monster in their home must be familiar with. (although even those children that are a little less monster are typically also proficient at that scream) we couldn't lie him on his back. ever. for any reason. EVV..VVVVER. changing his diaper was, and is, absolute torture. No idea why. it's not painful. we've had him tested. he just doesn't tolerate it. on the rare occassion that we were able to lie him down while he slept, we could not put him on his back. even today, at 9 months old, he does not tolerate being on his back.
At 6 months old, his specialists at Children's hospital called in a referral to the developmental specialists to have him assessed. When they came out to see him, at 7 months, he still was not crawling, not even close, he was not rolling over, and would not tolerate being on his back. He was sitting, somewhat independently, but he would support his weight on his arms, and would not take long for him to fatigue and fall over. he was rated at 4 month equivalent in self help/cognitive and speech, and 5 month equvalent every where else.
Now that he has been recieving early intervention services, he is doing much better in the gross motor department, he crawls real well now, and is starting to pull up and cruise. he's left side dominant (maybe he'll be a southpaw like his momma) but the majority of his communication is screaming, and growling. on occassion we'll get something resembling a word, but there is no indication that he has any idea what that word means. I think he's just mimicing. He still does not tolerate having his clothes or diaper changed, and I'm just waiting for the day that we are going to have child protective services at our door one day because they think we are removing his toenails with pliers. He was also diagnosed as being low tone thanks to the help of his early intervention therapists, and we found out he has to work much harder than the average bear to support the weight of his own body. And due to that, he fatigues easily. He has also been diagnosed with a sensory processing disorder again with the assistance of his therapists, and apparantly that is real common in children with extremely low tone.
However, he has suddenly stopped growing. he has not gained an ounce, or gotten even an inch longer in over 3 months. Something new to investigate. Is he suddenly not producing the growth hormone? is it due to his feeding issues (which may result in a feeding tube)? is it due to his skeletal displaysia? or is it something totally benign, and he's going to randomly start growing at waay too fast of a rate all over again and nobody will know why? As of right now, he has been 27 1/4 inches long, and 18 pounds 2 ounces since he was 5 months and 3 weeks old.
He has meltdowns like you would expect of a 5 year old, and about as noisy. He screams, bites, pinces, scratches, arches his back and kicks. Sometimes pulls his own hair, and bites himself. Most of the time without any apparant reason. he will be playing with his toys, and suddenly just melt down. when we try to leave, he will throw his fits until we are through the front door, and then he seems to be fine, same with getting into or out of the car. He fights us so hard about the carseat, that we just leave it in the car, and carry him to and from. he will arch his back, hit, pinch and bite until he is buckled in, and the car is moving. As long as the car is moving, he's happy, playing with his toys in his carseat, and babbling to himself. as soon as the car stops, be it a red light, a stop sign, or pulling into our driveway, and we are back to the blood curdling banshee scream, arching his back, biting meltdowns, only when tied down in his carseat, that seems to only make things worse.
Don't let all of this make you think that he is just a difficult little monster 100% of the time and I regret having him. that is not the case, not by any sense of the imagination. I love my son to pieces and wouldn't trade him for the world. he does have his difficulties, but is generally a happy, playful loving little boy, that doesn't like strangers, loves his family, and his mommy and daddy, and his big sisters, and will hopefully soon get to meet his big brother. His GGs and Papas, and his grandmas and grandpas, aunts and uncles are all a large part of his world, and I don't know what I would do without them.
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